I am interested to hear other carers experiences, in terms of the re-opening of adult day care facilities in their area. 2020 was an awful year for my family, as I am sure it was for many people. I am in my mid 40's, I have a disabled sister slightly older than myself, she has physical and mental disabilities, meaning she requires 24 hour care. We lost my mother last year to cancer and my father who is nearly 80, is now caring for my sister on his own. He lives 250 miles away, so I can't help on a regular basis, although he is trying to move closer. The day centre remains closed and so far, the one letter he has received from the council since March 2020, states there is still no date for it to reopen. I understand that unlaying health conditions, mean it is difficult to reopen, but the 1.5 hours twice a day Mon-Fri (although not always) is no where close to the 8:30 to 4pm, my sister used to receive along with the activities like music, that being at the day centre used to provide. Now, on a wet day, she is just gets driven around in a bus. My father thinks it will never reopen, if that is the case, how can he ever get the same level of care again. For the first time in ages my sister started biting her hand again, this is something she used to do regularly as a child, but then stopped as she got older, it is clear that this is having a huge negative effect on her.
Re-opening of Adult Day Centres: I am interested to... - Mencap
How about asking the local authority to re-assess your sister's care and support needs under the care act and look to change the way her support is provided? Maybe through a private day care provider/direct payment/ personal assistants-that way it will be person centred. Your Dad also needs to have his care and support needs assessed and/or his carers needs.
Thanks for your reply. Due to the loss of my mum, my sister's social worker has been out and re-assessed my Dad's situation, initially my father had considered my sister going into full time care and an application process was started, but then he decided to move closer to me, so they halted the application. At the moment they aren't going to do anything until he has moved and my sisters care is then passed over to the new council.
I'm in newcastle upon Tyne and care for my 34 Yr old autistic son. Because his centre wasn't reopening, but still wanted payment I looked to other services. He now has 3 days a week, but many don't as they have no-one to advocate for them! My social worker was invaluable, if you don't have one for your sister I would demand an immediate assessment with one, stating your sisters mental health is suffering, and your dad at 80 is her 24/7 carer, that is absolutely outrageous! If you do have one you need to get behind her and push, don't settle until you get something in place.
Thanks for your reply. Due to the loss of my mum, my sister's social worker has been out and re-assessed my Dad's situation, initially my father had considered my sister going into full time care and an application process was started, but then he decided to move closer to me, so they halted the application. At the moment they aren't going to do anything until he has moved and my sisters care is then passed over to the new council. So at the moment all he was hoping for was the day centre to re-open in the mean time.
Do you have shared lives where you are? My son has access to it one day a week and loves it, they match a carer specifically suited to your sisters needs, and takes her out for a few hours activity, whatever she chooses. It could be a temporary fix if it's possible, until they are relocated and settled
I very much agree with the advice given by Bloominmarvel. My son's centre (Flintshire) opened in a very limited way for those being cared for by parents only. My son lives in Supported Living. He was out of the Centre for about 17mths . He used to attend for 3days a week but currently is only being offered one. His behaviour has shown signs of stress, unhappiness, boredom etc. He loved the Centre. They all love being with their friends. The toll on people with LD has been heavy and under-appreciated.
I totally understand your worry and the barriers to caring from afar. I cared for my father from 250 miles away and it is so hard. I also agree with Bloomingmarvel, that asking for a full review of your sister’s care needs is a good thing to consider doing. There is unlikely to be only one service providing day care in some form in your area. It sounds like she is going to a service run by, or contracted by, the local authority and there are likely to be other independent providers. 15 hours care a week is absolutely not enough for someone in your sister’s position. My one piece of advice would be to try your absolute best to be at the review meeting - perhaps that could be arranged with Zoom - because then any straight talking doesn’t need to be done by your dad and he need not worry about upsetting anyone. Read up about review meetings beforehand, check out your local authority’s legal responsibilities, and keep the reviewer focussed on your sister AND your father’s needs rather than budgets. It might be that in order to have more choice, your sister might have to receive a direct payment to pay for her care if she doesn’t already, but this needn’t be onerous as adult social care should offer support with this. Another thing to keep in mind or discuss is a contingency plan for emergencies. I hope your family get the help they need. x
my son's centre has been open for quite a while now, with restricted numbers etc - but he is anxious about the virus and has not yet returned - he does take part in zoom meetings though. We have continued to pay throughout, even though he didnt attend, as we would like the service to still be there when he is ready to go back. He is under a bit of pressure to go back now, but doesnt feel ready, but the centre has been good on communication and I know all the staff have had their vaccinations along with most of the users. The centre plans to re-open fully once restrictions have lifted.
I agree with the previous comments in that you should demand a Social Worker to re-assess your sister's needs. We live in Suffolk and our son's Day Centre was re-opened last August with reduced activities but still adequate for our son's needs. During the Lockdowns a member of staff would regularly telephone us to check how our son was and send out Activity Packs to help keep him occupied. I think it's disgraceful that your father is not getting the help he obviously needs. Also contacting your father's MP might help too.
Hi I agree with all the previous comments that your sisters needs reassessment. Also your father also needs a carers assessment. At 80 he really shouldn’t have all this responsibility. Have you thought about the future and when your father is no longer able to support your sister? Supported living might be good to consider now when the family can support her to move otherwise when your father gets ill/passes away she will be in crisis mode and may just be put in any home ( not necessarily one that you would choose for her) which has a vacancy. Because of your fathers age you have a very good chance of getting something. I wish you all well.
I am very sorry that your family is going through this all, and that most of the caring is being done by your father.
There is a quite a lot going on in your post, and it may be good to talk to someone about this. Please do call our helpline on 0808 808 1111 (or email email@example.com if you prefer). Our trained advisors will be able to have a chat with you.
I agree with the other posts on here that suggest asking for your sister and father's needs to be re-assessed. Their situation has changed dramatically and it is urgent that both their needs get looked at again.
hi catherinewood im sorry your all going through such a rough time, it might help your dad if he has access to a carers support group,but at the same time you can change your sisters day centre funding to outreach care funding-which woud be someone coming into the house and supporting her and taking her out etc,so that your dad can do his own things,my mum didnt like this so much as it meant having strangers in the beginning coming into her house and helping me with personal care etc.
to change where the funding goes you will need to speak to your sisters social worker.
i last went to my day centre in march 2020, ive not been since then and the only people allowed back still are those who live with parents,if you get 24 hr care you are thought of as being fine and supported safely, in my case it coudnt be further from the truth as im in the wrong place completely.
The main issue is that the decision on opening was left with local authorities. Some of them open and some didn’t. Perhaps we should all write to our MP to request them lobby government to define common guidelines to force councils to reopen day centres.
Hi my son is back in day centre 3 times a week 9.30- 3pm which is a godsend he normally had 5 days but I personally think the council's are using the virus as a way of closing down help for adults with learning disabilities.and as long as this government are in its just going to get worse because the council's will get less money and the first people proliferate out kids because they are an easy target. Unless one is in this situation people cannot imagine what we as carers are going through I sincerely hope your father gets some respite soon.
My son, who is 26 years old, has complex health needs and learning difficulties…his day centre was operating on reduced days (3 days 10-3 instead of 5 days 9-4) but this week they have reopened back to full hours and it has been a god send! Unfortunately, because of Covid and the strain we and so many families have been through, we made the difficult decision to move him to full time residential care. We are now in the transition process and he should be moving at the end of July. I agree with the other replies, about having your sister’s care needs reassessed as a matter of urgency…is there a contingency plan in place if anything were to happen to your dad? You really do need to stress how caring for your sister is affecting his health and well-being…unfortunately, if they think you’re coping, they’ll let you get in with it! Good luck x
I meant to ask if your sister used any Respite Care services? Ours in Suffolk re-opened last August although there was always one available for emergency care.
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