Worried about what to do when son turns 18

[AnotherDad]

Hi, our 11-yr old son has severe sensory impairment, learning disability, autism. He's a nice lad, easy-going and friendly, his main behavioural issues are to do with lack of understanding or safety awareness, but he needs a lot of supervision. He's non-verbal, still in nappies, has EHCP, attends special school, we've little hope of him ever being able to communicate much, he doesn't get far with picture-based communication or objects of reference etc due to seeming lack of concentration. He'll be high needs all his life we believe and crucially, always need 1-1 support when being taken out and about. Our only regular contact with social services is annual short breaks review. We use short breaks hours at local Mencap Saturday club which is good. We worry what'll happen when he's an adult. The local FE college has a special needs unit but from what we hear, he'd get just 2 years there for 3 days a week. What about the other 2 weekdays? And what about when the 2 years is up? We identified some local adult activity providers that look good, but of course they cost. Assuming approx £20/hr for 7-hr day that's £7k a year, for a day a week of being taken out and about doing things. So once he finished college it looks like £35k/yr for him to have some kind of day service each weekday. How on earth would this be paid for? Does anyone know what the "going rate" is, in terms of how much a local authority is prepared to spend on day services? Of course, if he didn't get a full week of day service, my wife and I are unlikely to be able to carry on caring for him, in which case he'd have to go into residential, but presumably either that would cost local authority more than that, or it wouldn't be decent quality provision. Sometimes we think the best bet would be, let him go to residential at 18 thus taking the pressure off us, as long as it was local, ideally only 1 or 2 miles away. Then we could easily collect him and take him out and about and he could still see us and his siblings. When the times comes, will there be some legal way we can ensure that for his well-being, he's still near to our home so able to still be in local community? Any advice, stories from anyone would be appreciated

[Jofisher]

Hi my son sounds very similar to yours apart from he has severe epilepsy as well. I am my sons deputy and I had to apply for that on the gov.uk website this gives me the legal right to be his voice and make decisions on his behalf which is imperative. My sons in care and he’s funded by continuing healthcare. I’ve also used a consultant social worker and she was worth her weight in gold. I would recommend you start looking at provisions now the sooner the better if your thinking about care and look on the cqc website to look at reports to make sure the home is a good standard but even then you still need to be thorough in your checks and local is a must so you can pop in as and when to make sure all is well. I believe social services fund upto around £450 ish a week but that was a number of years ago when I worked for them. I hope some of this helps you but I would be happy to discuss or answer any other questions you may have and I wish you all the best with whatever you decide.

[AnotherDad in reply to Jofisher]

Thank you. Very helpful

[AnotherDad in reply to Jofisher]

And just one other thing, I wish you and your son all the best too :). It is not easy.

[Jofisher in reply to AnotherDad]

It certainly isn’t and thank you that’s very kind.

[AnotherDad]

One other crazy idea I've had is that according to National Careers Service, a person who's on Universal Credit and unemployed, can get some course fees paid. So I wondered whether after he's done a level 1 (or possibly 0 if such a thing exists) FE course, which is basically working on communication, perhaps he could stay on in college beyond that (age 20 at that point). But its very unclear. I might phone their hotline. I guess the course might be free but transport and 1-1 support might not be. Basically it looks like the gov't did try to put in some support for people who find themselves without a job or qualifications after leaving school , and I wonder if people with learning disabilities could piggy-back on this system.

[class9F]

EHCPs can continue up to age 25 so you should be able to get some college provision until then. My son is 26 and was at college until age 23. He is now in a small residential care home 2 miles away from us. It is funded by social services and is around £1800 a week which is extortionate in my view but staff levels are very high 4 or 5 during the day for 6 residents and 2 at night. Within the next 2 or 3 months he is due to move into a supported living complex which will be cheaper for social services to fund as the accommodation will be paid for from housing benefit and social services will pay for care. it’s all local authority money just from different pots. He attends a day service 2 days a week which we pay for but when he moves into supported living we will increase the days he goes as social services have agreed to pay for it. Whilst you may like to look around now to see what is available a lot can change in the 7 years before you son becomes an adult. For instance the college our son went to at age 19 was fantastic when we went to view and he started there but by the time he left after 4 years it had gone from outstanding to inadequate in its Ofsted and CQC inspections due to poor leadership. Next steps are usually discussed at the year 9 annual review so you’ve got a couple of years. It does help though if you know what you want and are prepared to fight to get it.

[AnotherDad in reply to class9F]

Thanks very much for the helpful reply That's great your son got college up to 23. We've heard of people in our local area struggling to get more than 2 years, despite high needs in a EHCP. I suppose we'd need to be prepared to fight about this. You say you pay for 2 days a week day service? So despite the local authority paying £1800/wk to the care home, he doesn't get enough activities so you have to pay for that on top?! If I've understood that correctly, sounds terrible. And without wishing to ask anything too personal I'm wondering how you manage to pay for 2 days a week day service. My figure was £20/hr for 1-1-support which is £140 a 7-hr day or £7k/yr. Some places do it for more like £17/hr but once you've factored in some travel costs etc probably is £20/hr. Which is not even very much really, given that's got to cover the wages of the person and the organisation's overhead. So 2 days of that, well 1 day could be covered by spending the entire amount of the disabled person's universal credit leaving I guess DLA/PIP to pay for all other living costs. Another day could come from spending £7k net , so £10k gross of salary. Which, I mean a lot of us parents are actually willing to do this if we can, but its a huge amount of money and our earning potential is often restricted by having caring responsibilities. And how to cover, well if not the whole week, most of it.

[class9F in reply to AnotherDad]

My son doesn’t need 1:1 all the time. They call the users of his service supported volunteers. He “works” at a local country park doing litter picking and grounds maintenance. The providers have a part of the park to do their own horticulture where they grow plants and veg to sell. Ratio is about 1:6 and cost is around £35 a day 9.30-4. We use his pip mobility to fund it. Other local providers are more expensive. During one summer holiday we paid £70 a day at a day centre and one we viewed where there were lots of 1:1 was £100-150 a day depending on need. Don’t worry too much about it yet. A lot can change in 7 years and school should have an advisor who will be able to help. Both the special schools my son attended had “careers” advisors who knew all the options around college and day services. Research what he is legally entitled to and stand firm when they say there’s no money. It’s wrong but those who make the most noise get what they want.

[BenjiB]

I know it’s hard not to think of the future but 18 is a long way off. I had no idea at that age what the future would look like. Residential didn’t seem like an option but things change!

My son is 23. He too needs 1:1 support 24/7. He attended the college at his school until age 19 then moved onto a residential college where he still is. He’s there 38 weeks of the year. It’s about 40 minutes away. It’s LA funded and is about £170k a year.

In July he’ll leave and move into a residential house, funded by the LA. We are still looking at the moment. He’ll have a package of activities put together which again we are working on.

My only advice at this age is to make sure his EHCP is robust, is up to date and the LA keep to their time scales when updating at annual review. It was my sons poor EHCP that caused us issues when he was 19. We wanted the residential college and knew we’d have a fight for it due to cost. The LA wanted to cease the EHCP as they felt he couldn’t be educated any more basically because it was so out of date and it looked like he’d met all his targets etc. we ended up at tribunal but it was worth it. The college are amazing and he’s progressed more in the last w years than throughout his entire school life.

But please try not to worry too far ahead. There are options out there and the continually change. We don’t have deputyship, I’ve not felt it necessary yet but something to consider at 18.

[AnotherDad in reply to BenjiB]

Thank you for the helpful reply Its interesting to hear everyone's stories. I do take your point about not worrying too far ahead :). I will try not to. I just struggle with not having a general picture of what might happen. You've done well getting your son that residential college. I guess being willing and able to go to tribunal for that must have been crucial to that.

[BenjiB in reply to AnotherDad]

It was incredibly stressful but we fell in love with the place as soon as we saw it. It took 7 months with the LA acting unlawfully the whole way through. They ignored everything the needed to do for the court until they couldn’t get away with it any longer and conceded w weeks before tribunal. They thought they’d saved themselves some money but it just ended up costing them more as we managed to get a further year out if them as he’d missed most of the first year.

Sadly it cost us all our savings plus alot more and I discovered later my son would have been entitled to legal aid 🙄.