When the disability team screw up....

shegirl

Some of you will know about my son -13 year old severe autistic,' as complex as they can get',sever learning dis,sensory and speech problems,associated challenging behaviour etc etc.only in school part time,2:1 care in his own room.

For years now the local authority provided one night a week respite and during school holidays two 6 hour long day sessions at the respite centre.They deemed it as the minimum and,due to his complexity and dependence on me,could have more.

In June this year,a huge mistake was made at a meeting that neither myself,his psychologist or his disability worker (one we've had since June and still never met:eek:) where present at.This meeting, constructed by his !!!! of a headteacher, lead to 8 weeks removal of his transport which meant 8 weeks with no school or respite.Nothing was put in place to assist.

Obviously,to anyone with half a brain,that would cause problems. Autism 101- stability and routine!!!

Those 8 weeks weren't nice at all and due to the removal of everything,the immense iscolation effecting me and ds being fearful (he'd already had his dad run off a few months prior,has a fear of loss and we'd been looking for another house due to increasing noise levels were we were- incredibly sensitive hearing) I had to watch my precious boy regress and almost become completely unmanageable when prior to that he'd started doing really well.

Despite warnings of what would happen they wouldn't help and nobody seemed to register the need for stability and routine.He couldn't rely on me to tell him what was happening as I didn't know!

Fast forward to September and they start putting it back in place,ad two complete strangers to his personal transport who had no idea what they were doing.Things were on and off on and off,whether due to transport or one of the school assistants being off (they have never bothered with cover,they simply decide my son will have to be off instead)and he became confused beyond belief regressing further.

Due to the regression and the behaviour from his stores and confusion, the respite centre apparently struggled (he'd only been back at most 4 weeks due to all the messing) and instead of letting anyone know and seeking help they just pulled out,completely surprising everyone and devastating me as they'd always been so good.

So,since the end of October there has been no respite and school,again,is dependent on the health of his assistants and their families.

Disability team had pressure put on them to sort it,everyone assumed it was temporary but that wasn't the case.

Naturally,it hasn't done my son any favours and he isn't getting any better.I'm shattered and have no idea if I''ll ever be able to have a life again and miss my son the way he was:o Love him to bits but I miss him being happier,it hurts to see him so distressed.He now has nothing but mummy and mummy is emotionally drained and trying to make sure she doesn't lose herself,for his sake as much as mine!

That one night a week allows me to just be me,relax,wake nicely in the morning lol see friends if I wanted to,now I'm limited to texts and the internet!

It's been acknowledged that a major !!!! up was made in June and they all should've done something but they now can't.Apparently,they want to help but he's become too complex for them to offer anything apart from his disability worker phoning occasionally to see how me are!!!! They won't do anything until the regression is reversed,but he needs things to reverse it...

I've got a local councillor on the case and he's absolutely disgusted but not currently getting anywhere,despite the fact they can not just pull services and not bother- they have to assess the impact and put something else in place FIRST. He may have more sway with sorting the school out though as he is on the board of Governors (I'd love to see head teachers face when he finds out:D)

So,I'm currently stuck in a rut,as is ds and I can't make any of it better for him. I have no idea what to do tbh to get them to correct their own mistakes. I'm too tired too lol

I've looked into private care and for the same amount of care,but within the home,just the basics and for the lowest grade agency carers it would cost a minimum of £26,000 a year and not include the socialisation,would need extra on top for activities etc and would still leave ds very much confined within the home. Social services refused to consider direct payments:eek: too complex- they think they should manage his care...I tend to agree:rotfl:

I'm going to have to fork out for something and I'll make damn sure it's at the expense of his bar steward father (courts are handy with this!) but I currently can't see anything getting better before I lose the plot.

What the hell do you do when they make such f*ck ups?

ineed

Hi shegirl, I'm so sorry for what's happened to you here and the fall out , that's just awful.

I don't have much info on what to do about the school, but was it NHS treatment that pulled out? You can complain, some links that might help, pohwar, ombudsman.

Hope this gets sorted for you soon so your DS can get back to his happy self . Take care.

babyemily

How awful I really do feel for you. Have you contacted IPSEA in relation to his educational needs not being met? Also is there a support group on fb? Northampton have a really good group with lots of professionals on it there may be something similar in your area?
Wishing you all the support and luck in the world x

kingfisherblue

First of all, sending you hugs ((((())))). I know a virtual hug isn't much use, but you're too far away for a real hug.

I am wondering if the Children's Act covers any of this. Your son has a right to an education - I know it might not be the same type of education as most children, but the right is still there. For your son to access his education, he needs suitable and regular transport, which he is not currently receiving.

Your son will have a Statement, or at least I assume he will because of the complexity of his needs. Does his Statement name a particular school? What does it say regarding shortened hours? Is there anything about school transport?

I think that contacting IPSEA is one way forward, at least regarding his education. Maybe the Children's Legal Centre regarding your son's socialisation needs? Or possibly the NAS could help?

If your local councillor cannot help, how about your local MP?

If SS think that Direct Payments are too complex and that they should manage your son's care, write to them and ask them how they are managing it. Copy the letter to your MP and councillor. Give them a limited time to reply - maybe fourteen days. Then escalate further and send the letter to the Head of Children's Disability Services, along with a request for their Complaints Procedure. Again, copy in MP and councillor.

If you ever want a rant, a shoulder to cry on, etc, feel free to PM me.

KFB x

nlj1520

It's not going to put right the wrong that's happened, but how about contacting a solicitor? the NAS has a list of solicitors who specialise in this sort of problem and many do it for free (pro bono). They will be able to scare Social services into acting more quickly and protect you and your son's best interests.
Also make sure that you phone the emergency Duty Team EVERY time there is an incident. this means that it is officially logged and they cannot argue the extent of the problem. I was advised to call the police as my son was very physically challenging to me and i was alone with him. I actually never did this (too worried that my son might challenge a policeman who might not understand his problems) but friends in similar situations have and spent hours sat in the back of a police van while the situation calms.
ultimately the only was you can force Social Services to take your son on is to say he cannot live at home any longer. My son went into emergency respite following a HUGE incident and when SS suggested he came back home I was advised to tell them if they sent him back I wouldn't be there. I informed Head of Children' Services, the police and the child protection officer that if they sent him home I would not be there. It's the worst thing I have ever had to do and nearly brought me to a breakdown. However I still had rights on the placement of my son in a residential school.........with SS I chose the school and then we worked cloisely with the school so that his needs were catered for. He has flourished there and (now some problems sorted out) in his current adult placement.
I understand so well what you mean about getting your 'real' son back. My son was a bundle of terror and stress and once the environment was soprted out for him he went back to the happy anarchist that is his wonderful character.
I wish you all the very best in this, I remember wondering how the hell I was going to get through each day, each hour, even sometimes the next 5 minutes. To anyone who hasn't lived it the stress is unimagineable. If you want to PM for anything else I might be able to help with I would welcome the opportunity to help.
Also remember that The Samaritans are not just there for people who are suicidal. On a number of occasions I phoned them when the day ahead felt too much and had some wonderful people helping me to calm down and get myself back together.
Hugs

kazzah60

nlj1520 wrote: »

It's not going to put right the wrong that's happened, but how about contacting a solicitor? the NAS has a list of solicitors who specialise in this sort of problem and many do it for free (pro bono). They will be able to scare Social services into acting more quickly and protect you and your son's best interests.
Also make sure that you phone the emergency Duty Team EVERY time there is an incident. this means that it is officially logged and they cannot argue the extent of the problem. I was advised to call the police as my son was very physically challenging to me and i was alone with him. I actually never did this (too worried that my son might challenge a policeman who might not understand his problems) but friends in similar situations have and spent hours sat in the back of a police van while the situation calms.
ultimately the only was you can force Social Services to take your son on is to say he cannot live at home any longer. My son went into emergency respite following a HUGE incident and when SS suggested he came back home I was advised to tell them if they sent him back I wouldn't be there. I informed Head of Children' Services, the police and the child protection officer that if they sent him home I would not be there. It's the worst thing I have ever had to do and nearly brought me to a breakdown. However I still had rights on the placement of my son in a residential school.........with SS I chose the school and then we worked cloisely with the school so that his needs were catered for. He has flourished there and (now some problems sorted out) in his current adult placement.
I understand so well what you mean about getting your 'real' son back. My son was a bundle of terror and stress and once the environment was soprted out for him he went back to the happy anarchist that is his wonderful character.
I wish you all the very best in this, I remember wondering how the hell I was going to get through each day, each hour, even sometimes the next 5 minutes. To anyone who hasn't lived it the stress is unimagineable. If you want to PM for anything else I might be able to help with I would welcome the opportunity to help.
Also remember that The Samaritans are not just there for people who are suicidal. On a number of occasions I phoned them when the day ahead felt too much and had some wonderful people helping me to calm down and get myself back together.
Hugs

OP this is EXACTLY what I was going to suggest- there really is NOTHING like the threat of legal action to spur things on - it is disgusting that you are expected to cope alone when all these agencies say they can't cope

I wish I could do something to help - but I do honestly think contacting a solicitor should be the next step for you

sending you big hugs and virtual strength
xx

HB58

I'm sorry that I cannot add to the wonderful practical advice that has already been given - but I didn't want to leave the thread without sending you lots of virtual hugs and wishing you strength and courage for the days ahead. xx

shegirl

Thanks guys Took so long to reply as I keep ' switching off' to try and keep myself sane:o

The local councillor I have involved isn't getting far but he has made progress in regards of making them realise they need to think about things.Sons disability worker (who took over from old one in June) has finally agreed that she needs to meet us:eek: she's made it very clear how little she knows about either of us.

There was a meeting on Wednesday with school,psych,respite centre manager,service manager etc.Nothing came of it other than them stating that they know we shouldn't be left with nothing.No plans made,no respite discussed,just going along with the monthly meetings thing!

Last night ds went off on one when I was picking up some bits in the corner of a room.Obviously,that put me in a position where I couldn't restrain or calm him- I just had to huddle and try to prevent damage.Scared the hell out of me and a neighbour actually came into the house to make sure I was ok:o

Said neighbour is a foster carer so has lots of dealing with social services and although he's had none on the disability side he has said offered to call them to try and kick their butts too,as he's disgusted!

Sadly,ds outbursts yesterday were due to more messing from school over the past week - saying he can't go in as staff were off,then saying he can five minutes later,then he can't.He just doesn't know where he is and mummy is so tired and stressed that that is affecting him too It's not his fault

Finding it very hard to talk about this,not only because I'm so stressed but it makes ds sound awful but he isn't.he's amazing and I'm terrified of people seeing him the wrong way.

Next step will be a solicitor and I've informed social services of this.They can't just leave it like this!I''ve got an agency coming to discuss care options but it's so expensive.

I desperately need just one night to feel like me and one morning to wake up normally and relaxed,just to get myself back together and be the positive person I normally am.Just one bloody night would.make me feel better and more able to do it for a bit

I did have a ' treat' today though,for my birthday,and got to spend the morning with a friend (been a long time) with McDonald's in the snow on the moors with cheeses.music blaring So at least I've seen someone!

elsien

I agree that complaints and legal action are the way to go. Get hold of social services complaints procedure and whack in a complaint every time they bollox things up. Ditto with the school.
Waiting month after month for nothing to happen just aren't acceptable. You need to shout, scream, tell them you can't cope. Repeatedly and loudly. The threat of you withdrawing and them having to find somewhere for him should prompt someone somewhere to get their @rse in gear. (You don't have to mean it, you just have to convince them that you do.)
And for direct payments being too complex, read "too expensive." Get legal advice on that one as well.
And good luck with it all - you have to believe that things will get better at some point, for your own sanity.

Edit - don't fret about making DS sound awful. We most of us know that people with autism and or complex needs can be brilliant company. And extremely hard work. And often both at the same time.

ineed

It's awful that you've been backed into a corner to the point of having to take legal action . I hope things get better for you and your ds soon, good luck .

And happy birthday _party_:bdaycake:

shegirl

Well,just to update on how God damn useless and ignorant they are...

Finally met ds disability worker on Wednesday.She was utterly useless and stated she is appalled there is nothing they can do but there is nothing available.

The respite centre we used for years appears to be a permanent no go.The fact that none of this should have happened,someone cocked up,it was simple to fix and still would be,bares no relevance apparently.

She admitted she's in over her head!

She did try to appease me by stating they're looking to create a service for the more complex children.Looking to create?How many years is that going to take then?:eek::rotfl:

I intentionally arranged for her to be here at the same time as his psychologist,who was sat open mouthed when the above was stated!

In the mean time,while I'm battling the idiots,I have arranged a meeting with a local care agency who are quite happy to work with my son.

A while back I was planning on hiring befriended for him,but it will have to be proper carers now.The plan is to have a couple of hours within the house/garden initially (will be ages before they'll be able to take him out),getting to know him and doing things with him.He desperately needs a male influence and he shows this quite dramatically.Disability team were meant to be looking into carers for activities a while back but it clearly never went anywhere.

However,the downside is the cost:rotfl: A befriender just spending time with ds would be much cheaper,but I need experienced carers who will also be able to help out if there is an emergency,for appointments (impending blood test- no chance on earth I'd go alone and it would normally be done at school or otherwise where there is assistance) and for them to be able to take him out in the future.So,looking at a minimum of £80 a week (before mileage) for them to spend two hours sat in my house:rotfl::mad: while I'm also sat in my house...not a break really is it?But what else does my son have apart from mummy?

Still no break for me really,so not sure what else to do in the meantime.Considered a cleaner just to make things easier but not entirely comfortable with that.I do nee to try and make some time for myself though,so perhaps (dependent on finances) a little extra every few weeks?an hour so I can have a bath before 2am?:o

The ex won't be happy,as due to being off work until ds is in school more regularly and for a reasonable time,my money won't last and stretch forever.There are more expenses than just carers related to his disability and I don't want him to miss out on the things I have had planned for him either.So,he'll be receiving communication soon regarding footing part of the bill for his sons care!