onefamily

[onefamily]

Hi I’m new in the group, my daughter is 26+ and has a condition called Velocardiofacial syndrome which is a Chromosomal disease characterized by several symptoms including learning disabilities

She currently doesn’t have much going for her now. She completed two years Optional course at a college and her support was stopped afterwards for reasons unknown to me She has been home since 2018

I had no knowledge that I could appeal against the termination of her SEN . She is very sociable and fairly self caring, she continues to ask when she can go back to college

Based on my research I can see that most support ends at 25years

She currently has direct payment social service support for 10 hrs a week

She actually had a mental breakdown during the COVID lockdown due to social isolation. It is very heartbreaking because I can say that she was at the peak of her mental stability when she was in college

Does anyone have advice concerning

Apprenticeship

Voluntary Employment

Educational support

Support and daily engagement in the community

[Jofisher]

Hi it’s tragic isn’t it they almost fall off a cliff and they get forgotten I would register with the carers association as they have a specific group for you where you could learn from other parents who lave adults with a LD specifically and also speak to your local council as they offer things for those with a LD also your local area voluntary services they know loads of groups. Contact mencap as they will also be able to suggest things as well. You could speak to an organisation called workability. Try those and come back to us if you need more ideas Good Luck

[onefamily in reply to Jofisher]

Thank you so much for your advice

[skydivesurvivor]

Welcome! Hope u find support here

[onefamily in reply to skydivesurvivor]

Thank you

[DrSarahmac]

hi there. We had a similar situation with our daughter leaving college to nothing!!

I think the most important thing we've learned has been the importance of having structure and purpose to her week. For our daughter (37yrs) that has been employment but voluntary work was another option. It's been vital to her independence, self esteem, confidence and my sanity. Without it I'd have been unable to work myself and would have been constantly trying to keep her occupied.

We did look for social groups through local organisations but never really found anything that suited, but this was in the infancy of the internet and it may be easier now - Jofisher has some great suggestions.

We were fortunate that she managed to get a job with McDonalds who have been so supportive. She's been there nearly 20 years and they have been there through her ups and downs (social and health). They also provide free health insurance to employees after 3 years which has been invaluable. To date she's had around 6 private operations (including neurosurgery) fully funded and multiple specialist referrals. There's also a constant round of social outings that they organise. Not all of them suited Ella but she was always welcome.

They get a lot of bad press and I'd rather she weren't eating their food regularly but without them I think we'd all be in a very different place now, our daughter would certainly be in a wheelchair by now. I can't praise them highly enough. It may be worth speaking to them - they're always recruiting.

For me, with the benefit of hindsight I'd prioritise some form of emplyment - paid or voluntary. The social engagement and confidence building alone will create a platform to build on.

Best wishes and keep us posted.

[onefamily in reply to DrSarahmac]

Thank you ever so much for this valuable information 🙏🏽

[skydivesurvivor in reply to DrSarahmac]

Tried working on a therapeutic basis when the DWP dr. Stopped my denefits, went to appeal & was awarded double needed for long term incapacity?!!! Nice to know as the brain rewires over time y learn to accept theNEW world y face, this place saved me many times!! Take care & thank you for replying

[Maurice_Mencap Partner]

Hi onefamily , welcome to the community.

Mencap does run some employment services, but these are only in a few locations across the country at the moment. You can find out more about these on our website: mencap.org.uk/advice-and-su...

If there are no Mencap services near you, I'd recommend calling our Learning Disability Helpline where our trained advisers will be able to signpost towards things that your daughter might be interested in. You can reach them on 0808 808 1111 or by email oin [e-mail]. Hope that helps. 🙂

[onefamily in reply to Maurice_Mencap]

Thank you so much