life

[Gavin500]

HI there, I am a mother of a teen with learning disabilities . I worry how he will cope when I pop my clogs ,anyone else like me?

[Charlie2750 Community friend]

Hello Gavin500

Yes I know everyone worries about care for their children. My wife and i are both 69 and have a 32 year old with learning disabilitiesand we worry. We have made a mirror will which incorporates a trust so that our house is left in a trust.We have 3 boys and only 1 is sensible and has got married.I am not saying he is sensible because he got married but he has a job and a house and is independent of us.The other 1 lives in his own flat/bungalow but is visually impaired and not employable(I know people who are blind can still work but he is maybe not has skilful has I would like him to be) He drinks a lot and couldnt be trusted with a 1/3 of the house therefore his share will go into a trust because this wont affect his benefits.So money wise the children should be ok.Care of my son with learning disabities will probably either be living in a home with someone who does shared lives or living in his own accomadation with carers helping him and sleeping with him(in a separate room)He attends day centre each day so carers need not be there all day.I do not envisage his older brothers wanting him to live with them but I have not approached that yet.I have asked the oldest who is "the sensible" to be a trustee alongside the solicitor so that he can guide hthier moneys.I trust that we will not die both at the same time but I am hoping we will have another 10 years to finalise a suitable setting/plan for our sons.

In todays world I trust the NHS and Social Services to get my sons through this when we are both gone and that is all we can hope for today.I hope he finds someone who will hug him when I am gone and explain because that is the the heartbreaking time I cannot envisage .I will trust other people to get it right and I am sure they will come through because that is all you can do.

If you have a teen then there are financial benefits that you have not come across yet such as Employment support allowance and Universal credit. I can only say trust in other services and also read some of the other posts and Mencap may have information.Good luck.

[Galwaybay2]

That has always been a worry and probably is for all parents who allow themselves to think the unthinkable. Now the coronavirus has brought these thoughts back and I am so aware of my son's emotional dependence on his family. He is now set up in good supported living and should I die he would grieve but he has a structure around him that won't change and will support him through. When your child reaches 19, or even earlier, start the long process of moving on. Separating gradually while you are still around is the kindest way. Maria

[Sarah_Mencap]

hello Gavin500

You are not alone - this is something that affects (and worries) may parents.

Please do feel free to contact Mencap's Wills and Trust service - mencap.org.uk/PFTF

They can help you - they have free information and guidance on how to make sure your child is provided for when you’re no longer around. They have guides, and also offer seminars. These seminars are usually face to face, but during the coronavirus lockdown they are being offered online.

I have been to one of these and it was brilliant. I had no idea what a Trust even was before I went!

Here is a post from Laila in the Wills and Trust team - healthunlocked.com/mencap/p...

She explains it much better than I can. Please do get in touch.

Cheers

Sarah

[I_am_a_sibling Survey Community friend]

Hi Gavin500 - you're not alone, I don't think there's a parent on the planet who doesn't think about this...and siblings too. It's an enormous worry, and I echo Galwaybay2 's advice 'Separating gradually while you are still around is the kindest way' - putting plans in place, helping them to become as independent as they can be, involving any siblings in discussions about the future etc. How are you feeling about it all? Fx

[scottneil]

gavin500 i think we all have those concearns its my fear that once i am gone he has nothing to protect him from this world my son connor is now 23 in supported houseing but as it stands now they use lots of agency workers which is not of benifit as everone who has a child knows change of routine is of no benifit just causes confusion my son cant even butter bread its such a challenge i love him so much his innocence is wonderful but also fearful due to him trusting anyone he has no skill with money no concept of time but has said dad when you die what am i going to do like everyone gavin fearful but we can only try to make best of it and posible put gardianships in place