Care provider cancelling my sons support again

[Tracidu]

Hi , yet again my sons day support has been cancelled this morning . He goes to a farm setting day care unit but needs 1 to 1 support which they do not provide so I have to use an agency to be with him for the 2 days a week . I got my son up and ready to go this morning and the attitude of the provder was so matter of fact its made me so upset I feel hopeless for his future . After 38 years of careing for him and been through lots of problems with care providers who think they are doing him a favour and have no understanding of the parent life as a full time carer with no help at home which they know is my situation . Is anyone else constantly having this trouble with providers , its so difficult to get new ones and I am worried about getting new support a provider as my son is not good with change and has had a lot lately which I have to deal with the stress of it all . Sorry for the rant ,

[BenjiB]

this is the main reason we opted for residential care. My son needs to be busy and engaged all the time. As long as he has stuff to do his behaviour is ok. Sadly having him at home meant he had practically no time out of the house as it’s too difficult on my own. Now he has 1:1 support at all times and 2:1 support in the community. He has a full timetable each week with lots of different activities. It took a while to find the right place and it’s still early days but fingers crossed all is going ok.

[Tracidu in reply to BenjiB]

Thankyou for your reply , hopefully it all works out for your son .

[car67]

Hi

I am sorry to hear about your situation. Are you paying for the service or are they being commissioned by local,authority? Did they explain why they have cancelled?

[Tracidu in reply to car67]

They are being paid direct from Essex County Council . He has 2 daycare places one on a farm which he has to have a seperate agency for his 1-1 support, the other is building based , I wanted to give him a bit of variaty in his week and dont want him stuck in the building all week but the agency lets him down , he lives at home with me and they seem to think its ok to move thier staff to other clients when they are short staffed in other areas anytime they like with very short notice , my son was sitting with his coat and bag when I got the call to cancell . All this was set up years ago when powers that be said that LD adults deserved a varied active life ??

They were paid all through lockdown when my son didnt get one bit of help from anyone so it was just me and him .

I am on the state pension so carers allowance stoped when that started .

I am looking for good residential care for him but there is nothing in my area so I have to look further away , nothing suits so far . Any recommendations here would be very much appreciated.

Thankyou for your replies .

[car67]

I think they are on very dodgy grounds if they are being paid by local authority, they are not allowed to cancel unless it’s a valid reason in which case they would be paid. They really are playing the system, during lockdown they should have been providing a zoom service unless they weren’t paid but you said they were. I would definitely be contacting local authority and explain the situation to them I think the service needs to be looked into it.

If he has annual reviews it should be something you should bring up and ensure it is documented. Email the local authority and explain everything you just have , the service should be following his support plan and evidencing how they are working towards achieving aims no matter how small.

They have no right to be changing his package and removing his service, it is not your fault that they are short staffed, they have a budget so they should be putting in measures to run the service efficiently . Document everything, keep emailing local authority and keep a trail.

As a career you have rights too within the carers act, even if you don’t have a assigned social worker there will be a social care direct email that you can email.

Good luck 🤞

[Teachginge64]

Hi

It’s such a awful situation for you and your son , the care company obviously have no thought for the stress it causes you both .

I would contact the manager of the care company by email if you can and explain firmly why this can’t happen again and how it affects your son .

Tell them you are sending a copy of the email to the local authority who fund your sons care .

I had this situation with my son and decided to get the direct payment funds paid directly to myself and then employ my own care staff .

I now have 2 very good and reliable support workers who take my son out to do various activities .

The local authority should be able to sort out a payroll company for you to use .

Then you just put in the hours for your sons support workers every month and the payroll company tell you how much to pay them and what tax ect to pay .

It sounds very complicated but once you have done it a few times it is really quite simple .

It’s up to you of course but if you don’t choose to do this so would make sure you strongly complain to the care provider and your sons local authority , I’ve learnt that the louder you shout the more you are listened to unfortunately .

Good luck

[Tracidu in reply to Teachginge64]

Hi , thanks for your reply , Unfortunately the last time this happened with another care agency the social worker complained for me and they pulled out of supporting my son after 12 years , this lead to the agency he has now which was her recommendation , I have a feeling this would happen again

. Mencap who I used to pay for from Direct Payments pulled out after 12 years to take him to a special needs sports centre on Saturday's because he lived to far away , it was 20mts ?? Social sevices didnt want to know ....

Also to find carers who drive is difficult , my son is not good on public transport.

I feel I am puting my son across as a big problem but he is a friendly and happy man who gets on well with carers who get upset when they loose him . .its the agencies that cause the problems ..

he has severe learning disabilities, very little speech , ocd . Can be challenging if something is wrong .

[colleenfred]

Hi

I completely understand your rant! You are not alone in this situation.

It is very very frustrating to have the support cancelled at the last minute. Both for your son and yourself. I have experienced this in the past with carers from an agency who were supposed to be taking my daughter out for her activities. The agency would leave it until the same day or evening then ring and cancel with obvious lies and excuses. It impacts on everyone not just the person needing the care. I ended up putting in a complaint which their head office upheld. We stopped using this agency and had to search for a new one. However, I understand the worries of finding new carers and getting them used to each other.

I have been using Direct Payments for a few years now so I employ a Personal Assistant to take my daughter out and I also use an agency who provide a carer. This is all covered by the Direct Payment. Because of my daughter's ways there is only one agency carer available who knows my daughter really well so if she is off or if her PA is off for any reason there are no other carers to support her which does happen from time to time.

However, when all is going to plan it works very well! You do have to keep records/paperwork of what you use the Direct Payments for and it has to be what was agreed in the Support Plan. So it does seem daunting at first but once you get used to doing this it is actually not that bad. I think it gives me more control and say in what I want for my daughter and I have made sure that in her Support Plan it states that I can use the funds flexibly to meet her needs. The whole point of getting Direct Payments is supposed to mean that you are able to choose what support you want for your son/daughter and not be restricted by the local authority/Social services, in providing whatever support you feel is required by your son. You get an amount agreed that they will pay to you and then it is up to you to manage that funding and pay for whatever support or care is needed to fulfill your son's needs. I have met resistance and reluctance in the past with getting the right funding and what I can use it for but the more you push back and disagree armed with the correct knowledge ( which sometimes they get wrong) the better it is.

Hope that's helped a little bit

[Jofisher]

hi could you employ family to support you ? I really do feel for you. I used to manage a community care agency and it caused me so much stress because staff would let me down and I was the one who had to call the parents to disappoint them and more so their loved one, it was horrible having to do that so in the end I left as I couldn’t deal with staff who let me down and the families down. It’s so difficult to get reliable staff but I will say until we start paying care staff properly and we value what they do and give them the right training this will never stop sadly. I wish I could help but we are where we are. So I would become an employer and if necessary pay friends family people you can rely on.

[Tracidu in reply to Jofisher]

Hi, I was always told by social services the I couldnt use payments for family members . It would help a bit if I could .I understand its difficult to get staff as the pay is so poor and to find a carer with transport is more difficult as they have to use thier own car so this is why I prefer building based care for him but at the farm he has to have 1 to1 support which they do not provide , the carer from the agency he has lives 3mts away from the farm so good , but I think they move him to other service users when they are short staffed . My son is at home with me so its not so important as someone in supported living which I find wrong in many ways .

[Jofisher in reply to Tracidu]

I was given a personal health budget and I paid my daughter to look after her brother as she could have worked elsewhere but she knew her brother his seizures etc and they agreed it that’s all O can tell you so they can and do do it. Unfortunately this will always happen it’s not right or fair but this is what happens. I’m so sorry this keeps happening I would speak to social services and tell them this isn’t good enough.

[car67 in reply to Tracidu]

Hi

You can use direct payments to employ a member of your family as long as they don’t live in the same house. Lots of people are using this option as it’s more secure, it’s family and they feel more at ease and most of all they have the choice who to use and employ. With any direct payments you have to maintain the paper work. Def a good option especially if they drive too and have the flexibility.

[colleenfred in reply to car67]

Yes, that's a really good option if you have someone in your family ( not in the same house) that you could employ. That would give peace of mind and reassurance and you would hope they would have the same sense of compassion and motivation in supporting your person that you have yourself for them.

Unfortunately, we don't have a suitable family member that would do that or that wants the responsibility of caring in that role but it must work really well for some people.