Hello all, I'm new to the community and I hope you can help me with my question.
My adult child is in care. The care home owners say that they cannot share information about how their money/benefits are spent with me because of GDPR. According to them, not even how much they spend on shopping for my child. Does anyone else have any experience of this level of secrecy when it comes to discussing money with a family member?
Many thanks in advance for sharing your experiences and advice!
Who is his appointee? I’m my adult sons appointee for benefits and I have complete control over his money.
Hi Benji B, thank you for taking the time to respond!
It's great that you have control over you son's benefits it must take such worries out of your life.
We will probably have to take the same route. For now we're asking only to have an insight into our child's daily life and hitting a brick wall.
I did wonder if anyone else had run into the same problem of GDPR when trying to find out how their children are fairing in care?
whoever is the appointee doesn’t have to share with you but I can’t imagine why they wouldn’t! What do they have to hide?
I’ll never hand over appointeeship for this reason. My son is in a residential college and I just transfer what he needs to them.
Thanks BenjiB for the insight from an appointee's view point. We were shocked the care company have decided to be so secretive. Naturally we are now concerned about what they don't want us to see! Thank you so much for helping us to collect our thoughts. I think you have the right approach and we will look at what steps we have to take to become the appointee.
I was contacted by social services as soon as my son turned 16 and they came out to speak with us and gave me appointeeship there and then. If you’re not an appointee there is another way to look after your son’s money by applying for deputyship. You can apply on line.
Do you know who his appointee is? Does he have a social worker? Might be worth contacting them to express your concerns and they can look into it.
I can only imagine that we were given the same options, however my memory of the time is foggy. It seems that having a child with special needs means you go from battle to another just trying to maintain a level of equality for them. The appointee will be the care company. I will check out what both options mean (appointee and deputy) exactly and how to apply for them. We don't have an appointed social worker and we are in the process of waiting for one to be allocated. These constant battles do take a toll but onwards and onwards! We only wanted to know what the grocery bill was!! Thanks again BenjiB. Take care 
Oh definitely. Like you say as soon as you sort one thing something else crops up especially once they become adults. We have to lock doors and windows in our house to keep our son safe. The social worker said we couldn’t legally “deprive him of his liberty” so we had to apply to the court of protection for an order allowing us to. It’s all bonkers and wearing! I hope you can get things sorted. I was the appointee for many of our young people when I ran a care home. Everything was written in an individual cash book for each person and I would have had no qualms handing the book over to relatives, this was before gdpr and the like though!
Hello
I am sorry you are in the situation and don't feel listened to.
I would expect the care home to want to talk to you about your child to ensure they get the right support. Are they ok about sharing other information about your child - are they just unwilling to share financial information?
Does your child have capacity to say that they would like you to know and be involved?
If not, and the care home are unwilling to talk about it, you do get to the more legal solutions.
Here is more about mental capacity on our website - mencap.org.uk/advice-and-su...
Please do contact our helpline to talk your options through - mencap.org.uk/advice-and-su...
Best wishes
Sarah
Hi Sarah_Mencap,
Thank you for taking the time to read and respond to my question. The care home management do share information regarding behaviour as well as activities our child has been up to albeit irregularly.
The latter took a long time to get these in place. The care home was content to allow our child to sit in front of the TV all day so we pushed them to be more active and pestered for updates which we infrequently get. Mainly they say our child is fine or happy but nothing of substance.
However, it is only possible to have conversations on the terms dictated by the care home. If we probe to get a true insight into our child's care the GDPR card is held up.
Unfortunately, my child does not have the capacity to say if they would like us to know or not.
Thank you for the links I will follow up on both of them.
Stay safe and thank you again for your support
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