Considering moving to the UK

Hi WorriedM

Sorry to hear you're having a rough time with getting the help and support your son needs.

I would be surprised if anyone in England would be able to tell you they've had a wholly positive experience with their LA as they're notoriously underfunded, overstretched and bureaucratic.  Having said that, it's all relative isn't it.  Do I get the level of service from my LA that my son needs and deserves?  No.  Do we access a lot of support and services that I'm extremely grateful for and wouldn't get elsewhere in the world?  Very much yes.  (We're in City of York Council area btw)

It might be helpful to share some of the specific challenges you're having, if you feel comfortable doing that, and see if experiences of people in the UK are similar and where they differ?

Hi Louise!

I really appreciate this honest answer.

My son was just recently diagnosed, one of the recommendations was he needs an early intervention/special education setting, but there are no places available in the entire county. Reading the news, it doesn't feel very encouraging about the future as well in Ireland - there are kids sitting home for even for 2 years since there are no places available for them, some kids don't find a place when they switch from primary to secondary and the list goes on. Even before we had the diagnosis, creche told us they want him out and gave us a very short notice so there are no places in mainstream for September either. When we discussed with them again about his diagnosis and the supports he is entitled to, they said they are not willing to try. Basically, they want him out.

It's overwhelming as it is to deal with the diagnosis and understand that from now on, you have to fight for your son to get what he needs (and it's like this everywhere, I know), but to understand that creche is a business and they want him out, although for his development and well being he has to stay in routine and with other kids... We are both working, as you know raising kids is costly, but even more so when you have one with special needs, we need the job... That was the last straw basically.

Could you please elaborate on your two statements (if you feel comfortable doing so, or if you wish to contact me privately):

"Do I get the level of service from my LA that my son needs and deserves?  No.  Do we access a lot of support and services that I'm extremely grateful for and wouldn't get elsewhere in the world?  Very much yes."

?

Thank you

Hi Louise!

I really appreciate this honest answer.

My son was just recently diagnosed, one of the recommendations was he needs an early intervention/special education setting, but there are no places available in the entire county. Reading the news, it doesn't feel very encouraging about the future as well in Ireland - there are kids sitting home for even for 2 years since there are no places available for them, some kids don't find a place when they switch from primary to secondary and the list goes on. Even before we had the diagnosis, creche told us they want him out and gave us a very short notice so there are no places in mainstream for September either. When we discussed with them again about his diagnosis and the supports he is entitled to, they said they are not willing to try. Basically, they want him out.

It's overwhelming as it is to deal with the diagnosis and understand that from now on, you have to fight for your son to get what he needs (and it's like this everywhere, I know), but to understand that creche is a business and they want him out, although for his development and well being he has to stay in routine and with other kids... We are both working, as you know raising kids is costly, but even more so when you have one with special needs, we need the job... That was the last straw basically.

Could you please elaborate on your two statements (if you feel comfortable doing so, or if you wish to contact me privately):

"Do I get the level of service from my LA that my son needs and deserves?  No.  Do we access a lot of support and services that I'm extremely grateful for and wouldn't get elsewhere in the world?  Very much yes."

?

Thank you

Thank you Louise for sharing your experience and thoughts, I honestly appreciate it. Yorkshire is definitely one of the options we are considering.

In that case I think I probably do have a relatively positive experience to share!  Leon was diagnosed at 27 months and at that time he was at a mainstream nursery who were absolutely amazing with him and were really well supported by the Specialist Autism Teaching team at the LA to provide him with individualised input and to access funding so they could allocate him 1:1 support for almost all of the hours he was in nursery. 

He's six now and he goes to the local special educational needs school, which is wonderful, has loads of facilities (on-site hydrotherapy pool, soft play room, sensory garden, rebound/trampoline room) and excellent staff.  The school flexes its layout and facilities to try and best meet the demand for places each year, so it doesn't have a fixed number of places and then has to turn people away.  Obviously there's still a limit at some point but I think it's really reassuring to hear that they do as much as they can to accommodate the children who need to be there.  In terms of the wider Yorkshire area, I'm aware of another three or four SEN schools within about 1.5 hours drive of here and that's just off the top of my head, there's probably more, and there's a new school due to be built in the next couple of years in Selby which is 30 minutes away.  

Leon also receives some funding from the LA which is supposed to be used to pay for a personal assistant (carer) for Leon to access activities independently of me and his Dad.  However we have been unable to recruit anyone so that funding is usually used to pay for activities instead.  

The less positive stuff (and in the category of what Leon needs and deserves but isn't getting)...

In the periods where we have been in crisis we have been bounced around from pillar to post and received almost no constructive help from CAMHS or the Social Worker team.  The best the social worker could come up with was getting Leon funding for a new bed, which was so irrelevant and at the bottom of our priority list at that point in time.  

There is no SEN wrap around care, so no before/after school or holiday provision.  There is one service run by a local charity but funding is limited and places are prioritised for families most in need (rightly so).  During our crisis period, we were offered a place but it didn't feel like a god match for Leon as he was only 5 at that time and the service looks after children up to 18 so he felt like such a little dot in comparison!

Going back to CAMHS, Leon has been on the waiting list for over a year with no input despite being in desperate need.

So TL:DR, overall I think we're very fortunate but it's far from perfect too.  Yorkshire is a lovely place to live so I'd definitely recommend it from that perspective! 

Really hope you find a way forward for you all.