Preparing for teenage years and adulthood

[EggysMom]

One thing I have learnt through having a child with special needs is that you don't get things instantly (if at all ...) So our son is now 10, and is ASD/SLD/deaf, attends an ASD school under an EHCP. Minimal OT & SALT involvement via school. He definitely won't be able to live independently in adulthood. We have a small amount of respite (1 night every 2 months) which we see not only as a break for us (no siblings) but also as an introduction to living away from us; it took three years to get this respite.

So what advice would you give me for the next five to ten years? What else should we start mentioning at review meetings, what ideas should we start putting into the heads of the LA and Children's Services, what steps can we start taking now towards him transitioning to adulthood in the years to come? He can stay at his current school to age 19, and then we have a good SN college in our city.

Ideas, hints, tips and thoughts all welcomed from the MumsNet collective, many thanks!

Hi, my ds is 19 has asd severely learning difficulties and is non verbal and left his complex needs school in July, I remember we were asked a couple of years before he left school what had we had in mind for him following life after school.

Our ds did a combination of college 3 days and 2 days at day service, as it happens college was not for him and college removed him from the course but because we had day services for 2 days a week he’s still doing something while we sort out more days for him at his day service provider.

Be prepared that if you send your son to a college placement it may not work out so getting a combination of college and day services will not leave you high and dry should the placement full through.

Also start thinking about long term provision for your son, we’re looking for our ds to go into supported living and have viewed some places that are on offer, some were good and some ok and some were awful so be prepared.

Like you our ds goes for respite and has done since he was 9, his placement at a children services respite home was lovely and the staff were very experienced and we felt he was well cared for there.

Once our ds transitioned to adult services his respite placement isn’t as good and lacks that homely feel, but because of the lack of adult respite provision in our area we have no other option really and we wanted to keep the continuity of him having time away from us in preparation for when the time comes for him to move into supported living.

Be prepared for a rollercoaster of emotions as you start looking at what is available for your son, good luck and fight for him and his needs every step of the way I’m sure you will.

Thanks for your reply.

Once our ds transitioned to adult services his respite placement isn’t as good and lacks that homely feel

That's such a shame, as I'm sure your son was still quite child-like at that age - as our son will be - so transitioning to "adult" services whilst still thinking and behaving like a child must be hard.

My daughter is 21 and has SLD. She stayed at her special school until she was 19 and now attends a specialist college. I think it was useful to keep talking about specialist college early, so everyone was very clear it was what we planned.

We have had the reverse situation and didn't have any respite until my daughter was 18 and transitioned to adult services. She now attends an excellent setting that will unfortunately end with her EHCP at 25. I think it is very helpful to get direct payments set up as early as possible (even if it is a small amount) as having that did help with the move to adult services and the increase that we then received.

I do think it helps to be over prepared at every stage and to have already seen the college or day centre the LA will suggest. We now have my daughter's move to adult day services, hopefully at the same place she attends college. Finding a place for her to live in the future is much harder, the LA is pushing for a supported tenancy and that would require huge support from us and not safeguard her future.

Thanks. So once he starts secondary school, I can start mentioning "and then going onto specialist college" at AR so the idea is out there.

The small amount of respite he gets just now is via direct payments, from what you've said that should make transferring to adult services at 18 slightly easier as it comes down to how we spend the money rather than trying to arrange via a SW. I'm not sure on the age limit of where he goes now, something to look into for the first few years of adulthood until we can access some kind of supported living.

Yes once he starts secondary school it wouldn’t hurt to make them aware at your son’s annual review what your hopes are for his future, though when our son was 14 that was initially the start of school asking questions about his future and from there on it becomes very prominent in his annual review until he left school.

I don’t know if your county council does this but a couple of weeks before my son left school I received a thick book from our county council called “preparing for adult life: providers directory” which has lots of useful information and details about respite centres and day service providers along with lots of other useful information and contact details, my son’s school sent it home with him its a shame I never got it much much earlier, so it might be something to look into.

That sounds a really useful resource eggsandwich, I have never seen anything like that in this LA, they seem to pride themselves on having nothing and then using other neighbouring authorities

He could go to a specialist college up to the age of 25. If it is a residential college this could be a stepping stone to going into supported living afterwards.

You only get funded for 3 years at a specialist college so it's unlikely to be until 25. IME most students stay at special school until 19 and then have the 3 years.

You only get funded for 3 years at a specialist college

Not true .My son's friend is now in his 5th year at a specialist college, having been there since he was 16.

Your friend's son is very lucky! That wasn't the case at the three specialist colleges we visited, including the one my daughter attends. Occasionally students may get one more year if they have missed a lot of time with illness.

I think that was the case for his fourth year - he had had a lot of time out because of illness and problems with medication, but the last year the LA just agreed to fund even though parents were expecting a battle.