Planning ahead for after I’ve gone — Scope | Disability forum

Planning ahead for after I’ve gone

Sueval Member Posts: 10 Connected
It is my daughter’s 26th birthday tomorrow. A cause for celebration particularly as she only had a 50% chance of surviving her first few weeks of life. She has digeorge syndrome and her younger brother has high functioning autism. My daughter suffers with anxiety which has recently worsened. She has told me that she is absolutely terrified of anything happening to me and my husband as she doesn’t know how she would cope. We want to set some plans in place in our wills so that she can be reassured that she and her brother will be supported should we pop our clogs. Any advice would be welcome.


  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,555 Disability Gamechanger
    Hi @Sueval, happy birthday to your daughter tomorrow!

    I have found information on how to leave money in a disabled persons trust fund. This may be something to look into.

    Was there anything particular you wanted to put in your will?

  • Sueval
    Sueval Member Posts: 10 Connected
    Hi Chloe,
    Thanks I will look at that. I am wanted to make a plan so that my daughter and son both know who will support them when we can’t. Not easy because I don’t know who would be willing and able. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,555 Disability Gamechanger
    Hi @Sueval, I completely understand the importance of this. I am unsure what to suggest myself apart from discussing this when making your will.

    I hope the community is able to provide their guidance and I will have a look to see if I can find anything else for you.

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    Hi @Sueval
    Though it is a really tough discussion to have, it is an important one. It's something me and my husband have been discussing this week as my sister always would have been the one to take care of my kids if something happened to us both, but now she lives in Australia.

    It may be worth you and your husband sitting down together and thinking through who you would trust to care for your children and also what finances you would have in place? 
    Senior online community officer
  • April2018mom
    April2018mom Posts: 2,868 Connected
    This is a important topic. Have you talked to a bank yet? I also recommend drafting a will too. Talk to a lawyer they can assist you with this. I did some research and found this site
    Have a read. It may answer your questions. But bear in mind all disabled people are different. If you need further help, call their COP team (number is provided on the site). 
  • jaja
    jaja Member Posts: 76 Pioneering

    Happy birthday for your daughter.

    I am unable provide ideas about a will. I would suggest professional advice from a solicitor.

    I was thinking about giving your daughter extra resources. I wondered if you thought about aspects of your relationship and provide an additional resources. Give her another way for her to get that need met. Without knowing you  it is difficult to consider an example so I'm going with lets say you always cook soup. Only Mum and daughter do that job. You could slowly bring another person in so Mum still cooks soup but so does another person. It could be done very slowly at a pace that suits. It would ensure the practicalities were taken care of and traditions were kept going. You could cover any aspects of your relationship and her life.

    I posted about having a carer and was told that the assessment can include many things so there may be room for this type of planning.  I really can't provide any info on this but others will be able to.

    Another idea might be some professional help in terms of  thinking about death. It could be counseling or therapy of some kind.

    I would look at housing and make decisions about where they will live. I would suggest specialist advice.

    Having said all that I hope you both live a very long and happy life.

    Take care

  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Well said jaja!
    What Jaja said about maybe getting carers in , so your kids will get to accept someone other than you doing things, sounds a good idea.

    I also hope you and hubby live long and healthy lives.

    I have carers and dread the thought of losing my hubby.