Adult Care Packages, Any Advice?

Morning everyone, hello to those I know of old and to new people I don’t know :slight_smile:

This might be a bit long and rambling but our situation is a real mess at the moment and I’m not sure where I ought to put my energy so I thought posting on here might shed some light from other people who’ve been in or are in the same situation?

My son is 17 and has complex needs (intellectual disability, autism, two different types of epilepsy, chronic fatigue, fluctuating mobility issues, sensory processing problems). I taught him at home from the age of 5 to 15 and then two years ago began the EHCP process with a view to him doing the last year of secondary school and then going on to college (we were in Hampshire at the time).

To cut a long story sideways there were no school or college places in our area that could meet his needs so we ended up in a year long battle with Hants for suitable provision and eventually cut our losses and moved back down to Devon where, I reasoned, at least I could go for a walk on the beach if nothing else.

He is now in a good specialist college here which he loves, but we are still fighting the local authority almost a year after moving to finish the EHCP assessment (there’s still nothing from health or social care in it) and to provide what is in his EHCP. I have Stage 2 complaints in with both Hampshire and Devon at the minute and have just requested a couple of sets of records in order to check discrepancies - this is now more complicated due to my son’s age and the fact that I have to jump through hoops to give consent on his behalf.

We have finally had a social care assessment done and for the first time ever it’s factually accurate; my son’s needs are clearly identified and they have said we need help. The problem is the care package they are offering is quite inflexible and, due to his fluctuating health care needs, I think it might end up doing more harm than good. I have gone back to the SW to ask if there is a more flexible way of dealing with this so am waiting for her to contact me.

I am on my knees in every way possible. I’ve never had a day off and I don’t sleep well, for various reasons. At my last GP appointment I took a list of my symptoms with me and it’s three pages long. I had thought college would be a break for me, but by the time I’ve dropped him off (we are not automatically eligible for transport; I can fight it so it’s on my to do list but at the moment I haven’t the time or the energy) and then battled through paperwork and caught up on things that need doing but that I can’t do with son around or are easier to do when he’s not there, it’s time to collect him again. The holidays are basically spent recovering from the stress of term time and from my point of view, college is a lot more work for me than home education was.

Anyway - I’m digressing. I think my main wondering at the moment is with regard to him turning 18 next March, when he will fall under the remit of adult care. I’m just wondering whether I’m better off saving my energy for that battle rather than running myself ragged now? And what I really wondered was, how much control or input do I get over his care provision once he’s an adult? What would be ideal for us is if we have another me - someone else that can provide the sort of care I do for him, rather than booking people to do a short amount of time here or there and having to satisfy criteria. We need something flexible for it to work well. I just wondered if anyone else has experience of some kind of flexible care package and if it’s even an option, because if it is, it might be easier for us to just wait for that fight rather than carrying on with this one now?

Sorry it’s so long and thank you to anyone who’s read it! Any thoughts or comments gratefully received :slight_smile: Thanks x

The subject of transport to college has come up recently on the new Needs Too facebook group, started by a group of mums in Andover and growing, it is Hampshire, after all!! Your son is DEFINITELY entitled to free transport up to the age of 25!!!
Can you join and look at the links there - beautician due any minute!

Special needs … free transport ?

Government web site … regs should be crystal clear :

Apply for school transport for a child with special educational needs and disabilities - GOV.UK

Hi, thank you both, he’s entitled to a lot of things but isn’t getting them and I don’t have the energy or the time for all the different battles! Transport is on my list but it’s underneath EHCP, social care, tranisition to adulthood and 168 hours of unpaid care a week :slight_smile: So this is my current dilemma as to what I focus on; it’s just too many fights and I need to focus on the most important ones (which I’m assuming will be adult care as he’ll be an adult for sixty odd years but a child for only another six months? Not really sure how it all works) :slight_smile:

Transition from child services into adult ones ?

Over to the experts , MENCAP :

Transition into adult services | Mencap