Can I save DLA for my child's future?

[SpecialMum]

Hi all,
This is my first ever post here. I have a severely autistic non verbal child. She probably cannot lead an independent life. She receives middle rate DLA and I receive carers allowance. I had to quit my well paid professional job as her care needs are very high. I am worried about her future and do not want to burden my other child (eldest) with her responsibilities after us. So, can I save her DLA in a savings account ?

I did read in Facebook pages that DLA will be cancelled if you don't spend the amount on the child and are saving. To be honest, I don't spend my carer's allowance either. I have spent a very little amount off the DLA /Carers so far. It's not because I don't need it but because I am worried about her future. We don't go to holidays either because it's equally stressful for the child and us. I don't buy a lot of clothes, bags, shoes for myself as I am not working and do not go out and about. I basically lost interest in all these.

We try to meet our needs and buy whatever children need(toys, sensory equipment, tablets) with my husband 's salary. That doesn't mean, we have a lot of bank balance but we do have our own commitments, loans and mortgage. I keep the house expenses low by buying few things like may be furniture, curtains, decors etc from gumtree or marketplace. But food is something which we never compromise on 😜. We have a loan borrowed when husband dint have a job for few months due to covid but did not spend the DLA or Carers amount.

So, my question is, can I save the amount? By doing so, will I loose both the allowances and all my compromises will go in vain. Please don't judge me😔.

If she needs supported living when she’s older it will be paid for by local authority you don’t need to save her DLA for that .....spend it on her now if you need it.... when she’s 16 the money will be paid into her own bank account with a named appointee if she lacks capacity

Yes, the government will pay her care needs but if she has money they will take that first - so there is no benefit to her to have it saved. You need to ask for a referral to the disabled children's team at your local council and get their assessment and advice.

It was me who mentioned about how you address your child - I did so not to be horrible but to point out that it sounded as if you were struggling to bond with her, and I wanted to point out that if this were the case its perfectly understandable.
I am a SENCo and have supported many children like your child. I think that its incredibly hard to parent a child with communication challenges and at times it may seem easier to shield them from the things that upset them. But how will they get used to the outside world if we dont expose them to it? The way she responds too the world is different to how other children respond. That’s because she communicates in a different way. her attention may well be fleeting but that doesn’t mean she’s not learning from experiences.
It’s important that you do things as a family - but I also believe its important for their sibling to also have some 1:1 time with you or your husband too.
You could use the DLA to employ a carer who can go to the park with you, or the shops, or play centres (after lockdown of course!). They could then help you with either child. I think as your child is in school more, you’ll get a better understanding of her and how to support her. I wish you well x