Top Tips for getting help: Hi, I'm a Mum to James, 1... - Mencap

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Top Tips for getting help

chopinfan
chopinfan
19 Replies

Hi, I'm a Mum to James, 19. He has cerebral palsy, epilepsy, autism, learning disabilities and challenging behaviour. I used to be a lawyer and wanted to share some tips for getting help that I've learned over the years. I can't give individual advice; these are just signposts. I'll be posting one each day this week, starting with social care.

I've done a brief intro on YouTube

19 Replies
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Sarah_Mencap
Sarah_MencapAdministrator

Hello chopinfan

Thank you so much for this intro. It is lovely to have you here.

I can't wait to read your posts over the next few days :)

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Hidden
Hidden

Thank you so much. I look forward to reading your posts.

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Hello1959

Looking forward to reading your post. It’s all very much a mind field .

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chopinfan
chopinfan
in reply to Hello1959

Hello, Hello1959. I love that: 'mindfield'!

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LeilahHU
LeilahHUHealthUnlocked

Hey chopinfan

This is such a great post. Would you mind if we shared your video on the HealthUnlocked social channels (Facebook and Twitter)?

Leilah, Marketing Lead @HealthUnlocked

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chopinfan
chopinfan
in reply to LeilahHU

I don't mind at all, I want to help. Please go ahead!

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LeilahHU
LeilahHUHealthUnlocked
in reply to chopinfan

Ah thank you so much. I think people will find it very helpful and relatable.

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Shue
ShueCommunity friend

Your comment re getting NHS to pay for certain treatment intrigued me. My son 26 years with Downs, Autism and SLD developed Schitzophrenia 18 months ago. I have cared for him at home and devoted myself to his recovery. I now need help with rehabilitation of life skills etc. I can't fund myself as lone parent. Any info re funding would be greatly appreciated. Best wishes.

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chopinfan
chopinfan
in reply to Shue

Have a look at the National Framework for NHS continuing healthcare and in particular the 12 domains which a person is assessed under. If you think your son might qualify then ask his GP to refer him for CHC funding. You could also ask for a care needs assessment for him and a carers assessment for you from the social care department of your local authority, assuming you don't already have that. Social care and health may liaise about providing support to you both.

gov.uk/government/publicati...

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Shue
ShueCommunity friend
in reply to chopinfan

Wanted to say thankyou for the reply, sorry it's taken me so long. Best wishes.

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Oldgirl64

Hello, I am mum to son Cameron who is 27 years old and has autism, OCD and anxiety. Cameron has been in supported living for 3 years. Thing is he doesn't go to bed a lot of nights and is exhausted. He has a busy week and goes out with sometimes just a couple of hours sleep to get through his day. He can be aggressive towards people because of this. Apart from this big issue he is doin good okay.

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tiggybenny

Hello I have a 17 year old son with a condition call Cri du chat Syndrome he has poor muscle tone, he has learning difficulties and suffer from anxiety and has very volatile behaviour. We are struggling as a family, I have two younger son of 15 and 11. I spend all my time with my eldest son and feel it is starting to have a massive impact on my relationship with my two other sons and my husband. I am hoping to get some information and advice from various avenues and though this forum would be great. We are considering residential for our son but I need to brace myself for a rough ride so need to equip myself with as much information as I can, but I find this all very daunting 😕 and don’t know where to start looking ☹️

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tiggybenny

Hello

I am new to this site today and found your message above but was looking for the following posts but can’t seem to find them.

I have a 17 year old son with a condition call Cri du chat Syndrome he has poor muscle tone, he has learning difficulties and suffer from anxiety and has very volatile behaviour. We are struggling as a family, I have two younger son of 15 and 11. I spend all my time with my eldest son and feel it is starting to have a massive impact on my relationship with my two other sons and my husband. I am hoping to get some information and advice from various avenues and though this forum would be great. We are considering residential for our son but I need to brace myself for a rough ride so need to equip myself with as much information as I can, but I find this all very daunting 😕 and don’t know where to start looking ☹️

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chopinfan

Hi tiggybenny,

Search for my posts under' 'getting help with social care' and 'care funded by the NHS'.

Once your son is 18 he will be regarded as an adult and you are not obliged to house him. You can ask for a care needs assessment from social care to look at him living in a supportive environment which is not with you. Whilst he is only 17 you could ask social care for respite breaks, or for support at home. If he would benefit from going to a residential college you could also consider asking for an EHC needs assessment from the education department of your local council. Good luck.

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crazysquirrel

thanks for doing this -your posts are great.

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ladyofthelough

Hi Chopinfan, great video which enticed me to join this site today.

As you were also a lawyer ontop of caring for your son so hopefully will understand my situation, I wonder if you can help with my dilemma. (or anyone else reading this).

I have a 27yr son with cerebral palsy who is now in supported living from 2016 and I am very happy with his placement.

My problem, Capacity.

In 2012 my son was listed as not having capacity (this was written 8 yrs ago when he was living at home, his life has changed dramatically since then). Everyone who works with him disagrees as he can make decisions about his day to day life. My concern, a year ago he said he did not want to see a particular person, he told all the Staff he works with and also the person concerned. The Trust was also informed of this.

Last year the person turned up unannounced at this daycare centre and said he was taking him. The staff did not want to let him go so called the Trust for advice and was told to 'let him have him'.

My son returned distressed and became ill refusing to eat, drink and has never returned to his daycare centre.

I challenged the Trust on this and was informed they have the final decision as my son has been deemed not to have capacity and they make his decisions. No one else was involved in this decision it was one Manager at the Trust who made the decision. Is this correct.

I have since discovered (shocked) that once a disabled child enters Adult Services as a Vunerable Adult at 19yrs old the Trust then make their final decisions, not the family.

This incident has happened again recently (a year later) when this person turned up unannounced and again my son has become ill and now in hospital. My son has also told his Social Worker he does not want to see this person.

I do not believe the Trust are acting in my sons best interest and I do not know where I stand legally and how to protect my son.

All the Staff and Managers who work daily with my son agree he has capacity and treat him as so in all his decision making within reason which includes who he decides to see but the Trust have disregarded the staffs opinions and my sons decision not to see someone.

I asked the Trust to reassess my sons capacity and they refused implying disabled people do not improve!!!

HELP.

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Sarah_Mencap
Sarah_MencapAdministrator
in reply to ladyofthelough

Hello ladyofthelough. Welcome to this online community and thank you for posting. Can I just check when you say the Trust - are you referring to a legal Trust (as in Wills and Trusts) set up to look your son's interests, or a Health Trust?

Either way, you might like to talk to one of our advisors on the our helpline - 0808 808 1111. All the best, Sarah

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ladyofthelough

Hi Sarah

Sorry I didn't make it clear.

I am referring to the Health Trust.

I had called the help line last week but had to leave my number as it was busy but haven't heard back.

I will try again. Thank you so much for your response.

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Sarah_Mencap
Sarah_MencapAdministrator
in reply to ladyofthelough

No problem at all. There are so many different sorts off Trusts :) I hope the helpline can help.

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