When the disability team screw up....

shegirl

duchy wrote: »

Bah stupid iPad I wrote a novel then lost it

Big hugs Sweetie....any news ?

Not really.

Disability worker and her manager have both proved beyond useless.They clearly haven't bothered.

I gave them the info for a care agency along with details of what they would do.Both claimed to have no knowledge of the agency yet a friend of mine who works for said agency knows they use them!

I know there are several providers.His psychiatrist and colleague know there are things there and that they are not doing what they are meant to.His psychologist is banging her head against a wall and the local councillor has pushed and pushed but got nowhere.

And now they're expecting me to have his entire post 16 life planned:rotfl:

NAR

How frustrating for you! Just as well you have the patience of a saint. :A

nlj1520

Hugs to you shegirl. I think you are amazing.
I really think it might be time to get lawyers involved to force them to get their fingers out. You are also entitled to an assessment of needs (I think it's called that) which you should make sure is up to date if you had one some time ago. Have you got a helpful GP? Mine used to write letters to the Social Care Manager saying it wasn't safe for my son and I to be alone and detailing the incidents she had treated me for.
I know that caring for people like our sons takes all our energy emotional and physical. Try to dredge up something to get a lawyer or the other support organisations mentioned earlier in the thread involved. I don't want you and your son to end up going down the crisis path I followed. Much better if things happen in a planned manner.
Now my son is 20, happy, healthy and living a life he enjoys, but my god what a road we followed to get him there! He is calmer, in an autism friendly environment, with support workers (2 for his waking hours, 1 overnight) who understand autism and mostly know him well and I am getting time to enjoy being with him. You can get there and it will happen for you and your son. Hang on in there and if I can be any help do feel free to PM me. There is a lot similar in our lives and if you want to rant that's fine.
I was lucky to have a fabulous network of friends who also had children with disabilities (all sorts of diagnoses) and it was a great relief to be able to talk to others who understood what I was going through. Perhaps your local carers organisation can help you meet some, if you don't already have a network of support?
Anyway, lots of positive vibes coming your way from me.

Confuseddot

Just wondering how you getting on ?

pmlindyloo

Someone mentioned the Community Care Grant.

I just wanted to say that at a recent course I attended the speaker emphasised that since this grant would no longer be in existance as from April this year, it is worth applying for.

This is because there is a ring fenced 'pot of money' that has been be used by April. it can not be used for anything else.

The speaker said that she had a lot of success claiming the grant recently because of this.

If anyone deserved the money then I believe you do if it can be used in any way to lesson the stress of your situation.

I would apply for it quoting the clause that was previously mentioned.

shegirl

We might be getting somewhere!

Unfortunately,it only relates to possibly having carers to take him out to activities for a couple of hours and it will take a long time before that can happen.Regarding our actual respite there is now nothing available at all they are apparently creating a new service though:rotfl:

mysterywoman10

I'm really really sorry to hear about all these problems you are having.

Taking it a stage at a time so I've got this right

His school stopped his transport to and from school? Or to the respite care after school one night a week? Most special needs transport to special schools is arranged by the LA not the school although I know this can vary from one area to another?

Either way this led then to him not going to respite one night a week? This would have or should have made him a LAC child as the authority was accommodating him. So you should also have been having LAC reviews with Social Services?

Does he have a care plan or as mentioned above been the subject of a LAC review? Direct payments would enable you to employ these people at no cost to yourself, if they are unable to meet his needs and you are able to offer a solution then if he has an assessed need it needs meeting and if employing the carers yourself is the only way to do it then maybe this is the best thing to push for?

Also say that you want a Carer's assessment which you are entitled to. Make it absolutely clear you can't cope without some respite.

All the other things you are doing and have been suggested do as well. Do hope you get some help soon in all of this soon. xxx

shegirl

mysterywoman10 wrote: »

I'm really really sorry to hear about all these problems you are having.

Taking it a stage at a time so I've got this right

His school stopped his transport to and from school? Or to the respite care after school one night a week? Most special needs transport to special schools is arranged by the LA not the school although I know this can vary from one area to another?

Either way this led then to him not going to respite one night a week? This would have or should have made him a LAC child as the authority was accommodating him. So you should also have been having LAC reviews with Social Services?

Does he have a care plan or as mentioned above been the subject of a LAC review? Direct payments would enable you to employ these people at no cost to yourself, if they are unable to meet his needs and you are able to offer a solution then if he has an assessed need it needs meeting and if employing the carers yourself is the only way to do it then maybe this is the best thing to push for?

Also say that you want a Carer's assessment which you are entitled to. Make it absolutely clear you can't cope without some respite.

All the other things you are doing and have been suggested do as well. Do hope you get some help soon in all of this soon. xxx

There are no LAC reviews and as far as I'm aware they are only for looked after (ie in care) children which ds is not.

I had a carers assesment done years ago.

He does have a care plan.

Yes,the school managed to stop the transport.Transport was the same for school and respite (stopped for school too!) and specialised as part of his package.That was a giant !!!! up which his disability social worker (who took over from last one in june and only bothered meeting us for the first time a few weeks ago)ended up taking part in without knowing what the hell she was doing:mad:

mysterywoman10

They do not necessarily need to be "Looked after" all the time. Many children in our Authority have a LAC review because they have regular respite care.

http://bradfordchildcare.proceduresonline.com/chapters/p_rev_child_st_brks.html#intro

That isn't our authority above btw. It depends on the number of nights, frequency etc.

If he has a care plan, then they need to meet it or change it which would involve another assessment or review.

I've never heard of school transport not turning up for 8 weeks this is really outrageous!!

3 years ago is a long time ask for another one.

Do you have any parent support groups in your area? Or SEN advocacy/advise services?

princessdon

Shegirl - Do you have a friend you can call and ask for help? I know people don't like asking but people will often help even if just for 1 night or a few hours.

I know I have mentioned before that I run a surfing club for Severe Autism, where we have 2 or 3 to 1 as a ratio for youngsters. It means they get to surf, the volunteers get a lot out of it and the parents get a few hours at the weekend.

It would have been around this time last year I was dropping off the new medical forms (we don't operate during the poor weather for obvious reasons) and one of the parents was utterly exhausted when I dropped the forms off. Like you seem now, she was as my gran says "living on her uppers", to the point of drain. After a chat (her respite had been stopped too), I arranged for myself and his favourite surfing bud - my 23 year old nephew to cover the whole of the weekend in her house, as it had been a while since he had seen us therefore taking him from his evironment at that point wouldn't have worked.

Just a night with sleep meant the difference. We then had him overnight every now and then when things got tough, luckily he is now back with regular overnight and holiday care. I wouldn't have known if I hadn't dropped the forms off and she said she felt bad asking for help.

Do you have anyone you can call on? Even if they need to sleep on a floor at yours for a night or two?