Worried about the future for DS with SEN

[Luupy]

I'm an older DM with 6 year old DD and 4 year old DS. DS has a rare syndrome, he's dealing with a lot - surgeries, various medical conditions, so has a lot of time in hospital. He has GDD but he'll be going to main stream school next sept. I am so worried about DS future - I had to give up work to support DS, he does go to nursery but I was never at work due to the medical appointments etc so had to leave work. I'm really worried about what the future will look like for DS if anything happens to either me or DH. I never seem to have the time to do the important things I really need to sort out, like a will, apply for dla. We are just about OK financially, but I really do need to be bringing in an income.
Does anyone else have a similar situation? Is there anywhere recommended I can go to make sure I am doing all the right things for DS future? It's difficult to say at the moment what his future needs will be, but I want to make sure I've put whatever I can in place to support his future.

Use the Cerebra guide to apply for DLA. If you then receive at least mid rate care DLA you can claim carer’s allowance.

Do make a will. It is hard to know what to do when the future is unknown. Some with Duda led DC decide it is best they leave any inheritance in a trust. Mencap is useful for advice on this.

Does DS have an EHCP with all the necessary provision in it?
Also, do you have a blue badge?

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS.

For DD, it is worth contacting your local young carer’s service.

Thanks for your reply, this is really helpful I've not come across quite a few of the things you've mentioned so i will look at all of this. He does have an EHCP. It's very vague but I've been told that they won't change it.
We don't have a blue badge and we do really need one so I will apply for this. I also didn't realise that mencap could provide us with this advice or that there was even a young carers service - DD does so much for him, even at this age.

Mencap has some information about future planning on their website. They also have an advice line. They can’t tell you what to do, but can give advice on what is available and the options so you can make an informed decision.

Don’t listen to anyone who tells you the EHCP can’t be improved. It can be. You may have to appeal when you next have the right of appeal, but it is possible. You can request an early review of the EHCP - on their website, ISPEA has a model letter you can use.

Thanks for your message, this will be really helpful. I'm hoping to start planning this week.

The EHCP process has been difficult and exhausting with incredibly poor communication. We are trying to arrange a review to happen before school starts.

If DS is due to start school in Sept 2024, there should have been a phase transfer review this term because the amended EHCP needs finalising by 15th Feb. On their website, IPSEA has a model letter you can use to remind the LA of this duty.