direct payments

For issues specific to caring for someone with learning disabilities
Thank you for listening to me its nice to know that people are out there l have to face up to the mess and talk to someone and try and get this all sorted out its my own stupid fault and l am just going to have to face up to it all l cant go on like this anymore l will go insane with worry .but thankyou for listening to me and making me feel as though we cant all be perfect and we all have problems
Lesley, it's not your fault. Before Social Services should make sure that you are happy to deal with direct payments, and that you understand the system. Offering training if required. In practice, many people are being told that they must have direct payments (which isn't true) without giving enough guidance.
Have you ever had an advocate, someone who can help you deal with Social Services problems? Maybe a Carers Support Worker? Both should be possible.
Can I ask how old your son is? If he is 16 or over, it's really important that you have a benefits check. You've already been given the details of the Carers UK helpline. If you haven't rung them already, do so as soon as possible, and they will explain all the benefits which you, and your son, are entitled to. So many people miss out because they don't realise that disabled people have slightly different rules applied.
Hi Lesley, my name is also Lesley and I also have a son with Downs and I receive direct payments for him. The management of direct payments can be very daunting, confusing and difficult to deal with and unless the paper work is kept up to date it can quickly spiral out of control. You appear to be totally overwhelmed by it and you certainly wouldn't be the first to make mistakes.... As others have said, please get in touch with the carers helpline. They will be able to point you in the right direction. Keep us posted.
Take care
Lesley
Hi everyone sometimes I can't cope but then l can its helped so much finding this site as sometimes I feel alone l live in a area where l feel very isolated from other people plus my son is quite happy for me and him to be together but with his needs and toilet needs l feel alone its just nice to have people to talk to so thankyou people who listens to me xx l think sometimes l am going mad and it's not my sons fault.family and friends don't understand because there not here everyday doing the same thing as l am doing when l had my son l never imagined this and plus with other children and aging parents its so hard xx
Have you asked Social Services for a Carers Assessment? There might be a group in your area which you could join. About 30 years ago, I started a group for families including a special needs child. You didn't need any referrals from anywhere, just came along if it was appropriate. We had lots of fun, coach trips, Christmas parties, summer playscheme, etc. I'm proud to say that it's still going strong today, for the next generation. One of the best things was not having to explain how you struggled etc, because everyone really, really understood. I'm still friends with some of the first members, after 30 years!