How to get support for adult daughter after my death

jan46
jan46 Online Community Member Posts: 1 Listener
edited April 7 in Families and carers

hi my daughter is 32 and lives with me (mum) she is autistic , Asperger’s as well as moderate learning difficulties. A social work assistant said years ago my daughter presents better than she functions.
so while she appears capable, life for her is really a struggle. She makes poor diet choices , poor hygiene choices , cannot retain information and worries constantly about not being able to process information and then gets very emotionally overwhelmed and breaks down and cries. She works two days a week but has lots time off. Her employers are good as she works in college for kids like her.
Her sister says she cares about her but does not understand the effects of her autism on her life. Her father lives in Spain with his knew wife and again does not accept Rosie’s needs. He openly says he doesn’t believe in special needs. Rosie does not want to live in Spain with him. How do l get help in way of sheltered supported housing for her when I’ve gone . We asked for needs assesssment but SW who came to us said they could find no proof of her autism diagnosis despite it being in her medical notes. We printed off copy from GP and still not believed so l threw women out in frustration. How can l make authorities understand that she will need a lot of support and just because they can’t see it she really does have support need when l am no longer there to help her. Sorry to go on any advice appreciated

Jane

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Comments

  • luvpink
    luvpink Online Community Member Posts: 4,064 Championing

    @jan46 hi and a very warm welcome to the community.

    Hopefully some experienced members will come along and offer you support and guidance.

    Take care.

  • Mary_Scope
    Mary_Scope Posts: 4,309 Scope Online Community Children and Family Specialists

    Hi @jan46 and a warm welcome to the community from me!

    I haven't been through this process myself so I don't want to give inaccurate or bad advice but hopefully as luvpink said, some members who have experienced this will reach out soon and share support and their experiences.

    I did find these two websites with information on planning for your disabled child's future after you're gone and how to write a will and set up a trust for a disabled child that I hope will be helpful😊

  • SheffieldMan1976
    SheffieldMan1976 Posts: 827 Connected

    I share your worries, except for my own Parents, Dad in particular who about 3 years ago was diagnosed with Alzheimer's/Dementia and is in his mid to late 70s.

    I'm worried about what will happen to me when they're both gone, Mum's 77 next month and has a myriad of her own health worries, she doesn't sleep well and has problems with her legs.

  • Holly_Scope
    Holly_Scope Posts: 4,904 Scope Online Community Coordinator

    Hi @jan46, just wanted to share this link too which covers an array of planning advice that might be helpful to you:

    Planning disability care for when a carer dies | Disability charity Scope UK