Increasing independence for an adult with 22Q/ mild... - Mencap


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Increasing independence for an adult with 22Q/ mild support needs

22QSibling profile image

We would greatly appreciate any advice about appropriate ways for an adult with mild support needs to increase their independence. My older sibling has always lived in the family home and has no support network so is very dependent on Mum (who is in her 70s) and me (who lives some distance away). We are especially interested in finding the right kind of housing, having an assistant (or more than one) support with more complex daily activities and widening our network. Thank you.

7 Replies

does he have a social worker my son s social worker helped him to get respite with a view to him moving into a place of his own he needs 24 hr care they have been very helpful it just has been stopped by the virus but hopefully it will continue .get in contact with the social care its orth a try

22QSibling profile image
22QSibling in reply to pogdog

Thank you pogdog

You need to contact adult social services in your area or your sibling area that is. You can ask to get a direct payment or personal budget to pay for your sibling care you can employ support workers. But social worker needs to do an assessment before that happens.

22QSibling profile image
22QSibling in reply to Leosammas

Thank you Leosammas

Sarah_Mencap profile image


Contacting you local adult social services is a good idea. They will know what is available near where your sibling lives, and can start the ball rolling to get them assessed. Additionally, you can also contact our helpline if you would like to have a chat about this -

You and your mum may need a bit of support as you probably end up doing quite a lot for your sibling. Do either of you have contact with other carers locally, or get any extra support?

See if there is a carers centre near where you live. They offer a wide range of support for carers, which can be anything for a chat with other carers, to more practical support with money and advice.

I also wondered if you had heard about SIBS? It is a charity aimed at siblings like yourself -

They have just started some online support groups that might be useful for you -

I hope this helps a little.

Best wishes


Thank you Sarah

Grateful for your responses, thank you.

Social services did visit the family home several years ago. It seems my family played down the need for help at the time. So little is known and understood about 22q Deletion - the professionals my family meet, including GPs, have never heard of the condition. Social Services have offered another assessment now that time has passed and we updated them on steps we have taken in the interim period. I’ve tried to highlight the effect no support is having on everyone’s mental health. My sister is not receiving any financial support (didn’t qualify for PIP several years ago and isn’t claiming any other benefits, even though she is not working) but depends on mum for a lot of basic needs. Mum doesn’t have any respite from my sister, aside from when they stay with me, and it is very intense living with her. I have sent information about registering and applying for support via email and post but think mum is overwhelmed and my sister doesn’t seem capable of recognising her situation and taking action.

Mum has been sent contact details for the local Carers Association but feels the pandemic has halted progress. I encourage her to make calls - as some people may even have a bit more time at the moment - but she has not pursued this yet.

I do not live locally to family but have done a lot of work to research, make connections, support emotionally, visit, organise and host. It’s my intention, now, to move forward in awareness, only doing what’s most effective and possible, in terms of my capacity. Otherwise I’m in danger of burning out again.

Thank you for your advice, shared experiences and links to SIBS and the support groups. I will definitely check them out. We attended a Mencap seminar on Planning for the Future and I find the website and newsletter useful sources of information.

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