I have a question in regards to support to people with learning disability during Covid19
My Daughter lives in supported living in a self contained flat, there are 8 flats in the building and always one carer within the building, up until the Covid19 lockdown I have always taken my daughter food shopping once a week.
As the care company have not put anything in place to help the residents get their shopping, I have carried on taking her shopping as she also buys food for another resident making sure we distance 2 meter as much as possible and get her to clean her hands with a antibacterial wipe when getting out the car. This week when picking her up I have been told by one of carer that this must stop and when I asked how she would get to the shop she said she would have to go by taxi when I said what I was doing was safer she could not answer this.
I am now getting her shopping for her but not the other resident as I as already buying for my elderly parents and myself, I have been told that when I drop off the food outside the communal door I can not even stand at a distance and talk to her as this is seen as visiting and that is not aloud and other residents will want their family to visit them, I pointed out these are all people with learning disability they should be allowing family to visit as long as it is done outside and at a distance, I was told this was not allowed.
My daughter is getting very depressed and the care company not seem doing anything to help the situation, and care is know only a phone call once or twice a day.
I am thinking she should leave and come home but don't want to take away the independence she has built up.
Written by
PaulRig
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Thanks for advise, I already emailed her social worker on the 23rd March about the changes to care and also asked what would happen if she or another resident should get Covid-19 and he said he would ask his manager and get back to me, which he never did.
I have called the adult social care team on 30th April telling them that I did not think the support she was getting was adequate she asked me her social workers name, and to my astonishment she replied he was no longer her social worker so asked who was, she said no one my daughter had been removed for the list a month ago, so about the same time I emailed him. I think this is disgusting but not surprised by his actions. The person said they would get someone to call me about my daughters care. I will be calling them back on Monday.
The social worker but adult disability team should have someone to help you. The manager of the place is also someone to talk to and explain your fears
This doesn’t surprise me Paul, the social worker for my son never bothered to inform me either when she apparently closed his case, it really is terrible, still being treated like a number. Try googling rules regarding adults with learning disabilities during lockdown. They seem to have relaxed the rules a little bit in that they can go out more than once for exercise if they need to, it really depends on individual and their problems. I also think some common sense should prevail, it seems to be lacking in some people unfortunately. My son is in supported living with 24 hr care, I am in high risk group, he comes down to see me once a week as part of his exercise. I live in first floor apartment, he stays outside and I open patio doors to chat to him. I’m lucky in that he lives about half an hours walk from me, I don’t know how far you live from your daughter, but the fact your supporting her and doing her shopping and can’t have a little chat from a distance when you deliver her shopping seems extreme. Hope you get some answers tomorrow when you ring.
Social services are a waste of time. They dont want to know. They find the place for the person to live. Then they leave everything to their family to sort all their benefits out. Parents are not told anything. Social services are far too slow with everything
This all seems so wrong, they don’t seem to be supporting your daughter much at all. I agree that you taking her shopping would be safer than her getting a taxi as many people would be using the taxi. Now your doing her shopping and dropping it off I don’t understand why you aren’t able to talk to her maintaining your distance, your not visiting your dropping off essentials. The carers seem as though they don’t fully understand the rules and could be seen as being over cautious. I agree with you they should be allowed visits on occasions, as long as social distancing is maintained as this will have an impact on there mental health. Is your daughter getting the support to go out for her daily exercise ? I hope she is as this is so important. Have you spoken to someone in a higher position in the care company to express your concerns, if not I would. Also check out rules for Covid19 for people with learning disabilities, they are so vulnerable regarding their mental health and need all the support they can get. Im sure Sarah from Mencap posted some info on here regarding that. It really is a terrible time for everyone let me know how you get on stay safe.
Many thanks for your reply and support I was started to think I was in the wrong.
I have been trying to find the rules for Covid19 for people with learning disabilities I will see if I can find the post by Sarah. I will also be talking to social care team on Monday.
This is totally unacceptable and cruel in the extreme. There is evidence of people becoming anxious and/or depressed due to the lockdown and the care provider has a duty of care to keep our loved ones routines as near to normal as possible to prevent mental health issues developing unnecessarily. My son also lives in a supported living environment, 10 single person apartments and there’s a diverse range of abilities from those needing a couple of hours a day to some like my son who has 24/7. Everyone has a small staff team and usually all do their own shopping with a member of staff, however, due to the current situation staff now go two at a time to do everyone’s shopping, the care provider has issued them with badges saying they are key workers. The care provider has also purchased a tablet to enable our loved ones keep in touch and staff help us all get connected. We are also allowed to visit and stay just inside the front door while staff bring our loved ones half way down the hallway. Myself and other parents have taken cakes and other treats and we put them on a table in the hallway which staff collect when we leave. Are you in touch with any other parents/relatives? There is strength in numbers. I would contact your local safeguarding team to ask for advice and I would also continue doing the shopping and also write a letter of complaint to the care provider, I feel they are completely in the wrong here. Good luck.
Thanks for your support and advice. In March I bought my daughter a tablet and a pay as you go data sim that I fitted in a WiFi router I already had, I went into her flat to set it up I was only in there about 5 mins and used antiseptic wipe to clean everywhere I touched but when I got home I has a call from my daughter to say she had been told I should not of gone in, I called the home the carer on duty said I should not be going into her flat I and no parent is allowed in the building, and asked about were is the sign on the main entrance she had no answer.
I think I now know the kind of people I am dealing with after calling my daughter today she said another residents girl friend came to see him and she went into his flat and carer on duty didn't explain she shouldn't be there and ask her to leave, Oh no they called the police and had her arrested.
Hello again? Have you seen the DOH guidance re Covid19 supporting adults with learning disabilities and autistic adult? Also the SCIE website also has lots of up to date information regarding how providers should be delivering care and support during the current situation.
Thanks for the information , I had a very long conversion with the care home manager this morning and looks like some of the care staff have been making up their own rules plus some jealousy by other residents who don't have any family helping them has not helped the situation.
They had nothing in place for family to visit, which they are now looking into, the impression I get is they are have been to scared of anyone getting the virus.
That’s good news I did think the staff were being over cautious and speaking to the manager was the right thing to do. Hope everything works out for you and your daughter.
This horrific situation is a consequence of the UK not prescribing to what in Germany is called 'Mask Duty'.
It is unsurprising we have the worst death rate in Europe because we have listened to the WHO directive - if you cough, cough into your elbow. We cannot accept the South Koreans expertise - they issue masks and testing in GP surgeries, and have a good record of dealing with the pandemic. Why not ? Probably because we are British. Shocking.
Despite, the virus being an airborne disease, the WHO do not advise mask wearing in public places, even where social distancing is not possible. As a result, and anyway up until now, support staff are not told to wear masks at work and understandably keep at a distance from those they are meant to be looking after, as well as being very concerned about who meets who. The care home statistics are indicative of how absurd and wrong this policy is because it is care staff who mostly have brought the virus to the premises.
If your daughter can manage the isolation then she should be all right where she is but if you have a big enough home for her, then I think you should be allowed to take her with you until the situation changes.
Perhaps a senior manager would be more open to discussing why you are no more likely to pass on the virus than the support staff, and why you would wear a mask in public and when in your daughter's flat, especially when putting pillows in place and when cooking and washing up.
If the Government now say all employed people have to wear masks at work, please chase your MP and local authority lead to make sure that includes NHS and Social Care employees.
Many thanks for your advice. In the conversation I had with the care manager we agreed that I would bring Sarah shopping to the main door of the building and I would then stand at the end of the path, my daughter would then pick it up, I would then wait around the corner and she would come out and we would have a conversation while socially distancing, this worked well and my daughter seems to be a lot happier.
I must point out that the residents are all adults with mild learning disability and some have other underlying health issues , like my daughter who is 46 and has epilepsy which is well controlled with drugs. Each resident cooks & cleans for themselves and does their laundry in a shared laundry room, they do not have a shared common space apart from the garden.
Hello there, my name is Sarah and I work for the Mencap Policy team. One of my colleagues brought your post to my attention. I'm really pleased to see the situation has been resolved. If you, or anyone reading this thread has issues around keeping in touch, or getting food to a loved one etc, please do contact the learning disability helpline and the team will do their best to help, involving my team if they need to, or helping you to make safeguarding referrals if necessary.
Visiting, keeping in touch with friends and family, and social distancing is something that we've been paying close attention to in recent weeks and months, and we are doing everything we can to make sure that there is clear national guidance and information for providers, and for families.
In the meantime, we're very keen to get as much information as we can about how life is for people with a learning disability and their families. We use this as evidence to draw attention to arising issues, and influence national policy and guidance. If you, or anyone reading this thread would like to help us, you can find out more about becoming a Mencap Policy Shaper here: mencap.org.uk/get-involved/...
Many thanks Sarah for your advice, I would seem that until I said about how other residents were getting their food that very little had been done in getting them help in this area. The company that runs the property is Metropolitan Thames Valley who I have had problems with since the daughter moved in 2 years ago. The new care manager I spoke to would seem to be trying to correct a lot of bad practice, that's if she stays as she would be the 3rd in the 2 years.
You may already have found a solution to your problem as you posted 25 days ago, however I have only just come across your post. I have not read all of the replies but hope the following may help if the problems continue.
There seems to be a huge misunderstanding on contact due to the government not being clear in their communication and not ensuring that the people who need to be informed are informed. This is such a great shame as it is causing so much stress and anxiety needlessly.
If your daughter is in the most vulnerable group and has received a letter from the NHS to instruct her to shield then she needs more protection, however, if she is permitted to go shopping herself then she is likely not in this Group and should only be social distancing. Given she is allowed to go shopping herself in a taxi it seems likely to be the latter. These are two very different things and her carer should be made aware of this.
As care homes have been under so much pressure it may be her carer is being extra vigilant but your daughter has the same rights as you and her civil liberties and best interested have to be respected.
You may be aware of an organisation called Sibs (sibs.org) who are an organisation that support siblings of disabled children and adults.
they have written the following under the heading: Coronavirus (COVID-19): Useful information for adult siblings:
In England:
You can meet face-to-face, with one other person, in an outdoor space, keeping 2m apart. You can also leave the house as often as you need to for exercise. You are permitted to drive as far as you would like to, in order to visit a particular outdoor space. Visit gov.uk/coronavirus for full details.
Face coverings
Some siblings may be worried their disabled brother or sister will be required to wear a face covering and that they may not tolerate it. This is not the case. Wearing face coverings is not compulsory. “People are advised to wear face coverings in enclosed public spaces where social distancing is not possible or where you are more likely to come into contact with people you do not normally meet. For example, on public transport or in some shops.” Visit gov.uk/coronavirus for full details.
Care homes
Siblings whose brother or sister has a severe learning disability and behaviour that challenges may be very concerned about the lack of face-to-face contact. You may be very worried about the detrimental effect on your brother or sister’s wellbeing and behaviour. Care homes and supported living providers should not have blanket policies that ban all visitors. Each person’s need and risk should be individually assessed. Read this advice from the Challenging Behaviour Foundation and return to their website regularly for the latest advice in this area
Public Health England has released this guidance to advise care homes on personal protective equipment (PPE)
There is different Information for those Living in Scotland, Wales, or Northern Ireland and this can be found at the same link under Face to Face contact.
The following Information from Social Care Institute for Excellence (SCIE) provides a guide to staff supporting adults with learning disabilities at the following link:
Many thanks for the information. As of Monday my daughter has temporarily moved out of her flat due to verbal abuse she is getting from another tenant, I am still waiting for a call from the care manager about how they intend to resolve this issue.
So sorry to hear that Paul, I presume your daughter is living with you. You both seem to have had such a traumatic time during this pandemic. Hope the issues get resolved soon, we just want our adult children to be happy but independent living for them is very difficult. My son lives in supported living with “24 hr support “ which comes with many problems!!
I also have a son in supported living during lock down I have had him home to stay once in week and time over weekend . This is to help his mental health and the isolation he felt in lockdown . The care company who looks after him could not stop this as he is a adult and it his decision . Also they are not there to dictate his living rules . I do not enter the flats but he comes out .
I've only recently joined this site, and have just read your post. My sister who has learning disability lives on her own in what used to be a warden controlled complex, except about a year ago the warden was withdrawn. Prior to lockdown we cared for my sister two days a week, with another family member covering one day and the local authority covering the other 4 days. For various reasons we've had to increase our input to three days every other week. My sister's flat is very cramped so we've continued to bring her to our house for the day every time we look after her. We know that this infringes the lockdown rules but there doesn't seem to be any alternative. We also help with some shopping and to keep on top of the laundry as far as possible. My wife and I are both well into our 70s and sometimes we both get quite tired. As is the case with some people with learning disability my sister isn't the easiest person to work with all of the time. However, given the health problems she has to cope with, she certainly could be a lot worse! She prefers her own company some of the time. She has a cat, which we help her care for, and the loss of independence that moving to a more protected setting would be devastating for her. I think that the system we have in place is the best we can do, but it does break some of the rules and is quite demanding!
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