Social care, challenging and complex multi disabilities and needing 2 to 1

[devientenigma]

Can I ask what help, support or respite you get, especially if your child is challenging, complex has multi disabilities or needing 2 to 1 care? TIA x

We don't need 2-1 (just 1-1) but otherwise we probably fit your criteria. We don't get any respite as apparently she is too young (4).

Moomummymoo dd2 is 4 and we were told the same thing

have I remembered right, and your DS has a residential placement now? (if not ignore the rest of my post)

While my own ASD son doesn't have those needs, I was TA and carer to a lad with severe ASD, Downs syndrome and extremely challenging behaviour. While he lived at home, there was a high level package of care.. a couple of nights a week at respite, after school carers etc. However once he moved to a residential school, and is now home for the holidays, they have had hell of a fight to get anything:( The attitude seems to be, 'well he's away most of the time, you just have to cope' :(

Hoping it's not he same everywhere and someone can help you fight for a decent package!

Lol Medusa, he has a day place at a residential school but not resi himself.

He doesn't get the level of package the family you supported get but the little he does get, social services want to withdraw it as now he's in school ! None of it was put in as he was out of school as they couldn't be seen to be supporting a child out of school. I have highlighted why he gets the bits he does and when I reminded the social worker of the holiday support, to keep the consistency with school. He's on an alternative curriculum for which they have said he needs 52 weeks, so it has been going in via social services at reduced hours in the holidays. Anyway she has pulled the plug for half term and like I say wants to stop the whole package which isn't much tbh. Hope that makes sense?

Using resi in that way not to give services is just typical and wrong on many levels, I hope the family are able to get something.

Moo and autumn, sorry, if it helps when my son was 4 I was in exactly the same position. I was fighting to get a social worker. My son who has Down syndrome, autism, pathological demand avoidance syndrome, heart condition, at the time couldn't walk, couldn't talk, had lung probs etc etc wasn't disabled enough fought for many years, unfortunately you have to keep at them! In the last 13 years we have had one good social worker!! Now that's changed and the new one wants to stop everything. My SILs dd is now 18 and as she has never had a social worker is now finding it hard to get funds for her dd to progress, so I would advise keep making yourself known, as you could need social services for something sometime x

Deviant thanks for the advice ! I appreciate you have a lot on your plate dd2 has autism and attends sp sch nursery and ds has high functioning autism , my partner also had depression and agoraphobia so we have a lot going on

For some reason they don't take it all into account, they should really, we have 4 kids with disabilities/additional needs, 6 altogether. My dh went right through special school with no dx, he doesn't read or write but does have a full time manual job. He also has diabities which is out of control and has been for a few year, it's started to affect his kidneys. My background is also questionable, however they seem to use it as a weapon against you rather than seeing it supportively but then that could be just us and it may be different for others. 3 of our 4 went through special school and 2 of those didn't need a social worker....apparently. I really hope you get something soon, all I can say is let them know your not going away x