Need respite for my son: I have a 23 year old... - Mencap

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Need respite for my son

Curryhot profile image
6 Replies

I have a 23 year old disabled son who peg feed and is incontinent who I care for on my own , he was going day centre at Ashley day centre for 2 days a week but know no longer goes as they are say he needs one to one and social services will not fund it , he was going widmore road respite 6 nights a month but last time he was there he ended up going to hospital because wasn’t looking after him properly and that’s not the first time I have had problems with that place , so I’m not sending him there no more and his social worker said there’s no where else for him to go , dose any one know what I can do as I’m struggling he’s doesn’t sleep of a night much , I have depression anxiety and arthritis’s in both hands knees and hips , I need help .

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Curryhot profile image
Curryhot
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6 Replies
Jofisher profile image
Jofisher

speak to Mencap helpline and the carers association for support for you. I pay for an advocate to help me fight the System here is her email her names Vanessa vanessa@socialcareadvice.co.uk

Curryhot profile image
Curryhot in reply to Jofisher

Thank you so much 🙏

redoninon profile image
redoninon

I feel for you i was in the same position and had a break down because of no help you have to keep on to the social services tell them you are not coping also speak to higher up and be a nusiance to them untill you get heard,they are not lying in a way there is a shortage of carers so its hard to get respite, what they will keep on to you saying is which they did me he would be better in a live in placement,but once you do that you have no say over your son so dont do that until you are sure.when the get to 18 there seems to be nothing for them its crazy.try looking online for free law help which i contacted and theres others online help,also citiziens advice maybe they are quite good but fighting social services is a nightmare they seem to be god so keep fighting.

49Twister profile image
49Twister

I really do feel for you, this is really hard work. Find out who is at the very top of adult Social services in your local authority and contact them. Inform them that you will have to consider putting your son into care if you don't get some respite. I know you won't do that but they need to realise how much your struggling. If he needs 1-1 they should be funding it, your his 1-1 every single day. They keep telling us carers, we need to look after our mental health and well-being, how are you supposed to do that without some respite!! You need some expert advice. Do you have any paid support? Make an appt at your local Carers Centre and they will advise you. They are a good source of information for many things, and should be able to help, I would start there. Take care.

Bergersil400 profile image
Bergersil400

By the sound of it your son would benefit from an assessment for continuing health care funding.My daughter was like this a few years ago when she was funded by social services. She could no longer have short term respite breaks as she needed waking night staff plus she needed 2:1 support out and about. It was her social worker who actually referred her for re assessment, which was successful, and she was found a respite home funded by the NHS. She now is 100% health funded.

As she has recently has gone into supported living, this means she keeps all her benefits as there is no monthly contribution taken off her for care.

DSSmith profile image
DSSmith

There is a very helpful document called Accessing Public Services and I have found it very useful.

It is 36 pages, but a fairly easy read and it guides you how to deal constructively with Social Services to get the best outcome. It also tells you your rights and how to exercise them.

The web page is here:

cerebra.org.uk/wp-content/u...

It might be helpful for you.

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