How to organise for the future

[Millie2605]

Hi all. New here.My son is 8 has LD, Autism, ADHD, non verbal and non communicative, and attends a specialist school. I'm a single parent. I'm currently looking at things long term. I've just set up a will and life insurance. Fast forward when he's older, what do I need to do in regard to supported living? How much is this going to cost?

I want my son with me as long a possible but I'm worried when I have to stop work to care for him that I won't be able to afford very much.

Also have no clue about what happens when he's 16 or 18 when he's legally an adult. I've seen I have to apply for something so I can make/help make decisions for him. What is this? How do I go about applying and how much is this going to cost?

Sorry, it's a lot of questions!

Thank you!!

[Borisdo]

Hi Millie, one step at a time eh?! I know how you feel, you want to get it straight in your head but of course so many variables to consider! you have made a good start with a will though at this stage! Supported Living or residential living is paid for by the state, it costs alot so you have to decide what would suit your son best when that time comes, hopefully a placement near you is what should happen, the more involved you are with the decisons, which I am sure you will be the better chance you have of arranging the best place for you son. When is he is 16/18 he will get a benefit called ESA employment support allowance but that may well be different by then, you will receive it on his behalf.

it is very hard to see into the future but my experience is that I spent an awful lot of time worrying and trying to predict things, try to avoid that, you will learn as you go along, other parents and groups always a great source of information. Enjoy the now with your son and put your energies into that, the rest will happen along, take care

[DrSarahmac in reply to Borisdo]

That’s a perfect answer. We all spend so much time worrying because we love our kids so much and that is what will drive us forward when the time comes and get the best possible life for them. Things may well change before then so focus on the next steps. This group is always here to help with each milestone as it arises. As Borisdo says, a will is a good thing to have in place. I assume you have a trust set up alongside that?

[Runragged2000]

Any advice given now about deputyship/benefits, may well be irrelevant by the time your son becomes an adult in the eyes of the state, so please don't worry about this now. Laws change, benefits change, accomodation available changes. Don't worry about something that you can't deal with now use your energy for looking after you and your son now.

[Bluey203]

Hi Millie2605, totally agree with what others have said, things change over time.

One thing I wish I had known before my son reached 16, (now 21 also with autism, severe learning disability, nonverbal) is that if he had a savings account in his name and mine, upon reaching 16/18 he is classed as an adult and I could no longer access his account on his behalf, and he could not access it due to lack of capacity. So they remain inaccessible until I become his Deputy for finance, if he had capacity then he could agree to Power of Attorney (simpler). Also the benefit Universal credit is means tested (this applies to many benefits), so savings reduce what he receives.

So I would advise keeping any savings on your sons behalf in your name, unless things change in the future 🤷‍♀️

[AMPJAP]

hi Millie just a couple of points I hope you have been in touch with children’s social services as you may be able to get help with respite for yourself and you son there also the Joseph Roundtree trust that give grants to help with extra costs in have a disabled child example washing machines paid for driving lessons it’s may be means tested now but social se4vics usually apply for you

I am assuming you have applied and got disability living allowance from DWP

Continue to ask questions from people who have fought and raised there disabled child through the transition from child to adult from home school college on to supported living. My best wishes for future

[greenapple123_]

I agree about the advice you’ve been given on banking. So much easier to have any savings in your account. When my son got to an age (I’m sure it was 15??) he was responsible for his own account etc but lacks mental capacity. I had to withdraw all his money weekly from cash machines. Now he is on his 20s me & his dad have joint deputyship over his finances. Also I do think it is too early for you to plan things as someone did say things change so much over the years.

[LearningLot]

I hope you've set up the will and life insurance to pay into a trust, rather than being paid directly to your son.

In terms of other things to think about, Renaissance Legal and Mencap run online seminars every so often on this topic. Also look out for seminars on EHCPs and Preparing for adulthood. This is information that goes into the EHCP once your son is in year 9. As others have said, though, be prepared for the legislation to change over the next 10 years. I hope it does, as it's a mess currently.

[LearningLot]

I hope you've set up the will and life insurance to pay into a trust, rather than being paid directly to your son.

In terms of other things to think about, Renaissance Legal and Mencap run online seminars every so often on this topic. Also look out for seminars on EHCPs and Preparing for adulthood. This is information that goes into the EHCP once your son is in year 9. As others have said, though, be prepared for the legislation to change over the next 10 years. I hope it does, as it's a mess currently.