Is it illegal not to have respite

My daughter was put into an assessment unit 2011 over failed services, she has a severe form of autism and they thought they could change her by doing this. Despite me saying no to them they insisted and she was put in a mental health hospital for 14 weeks.

Since she came out she’s constantly in her bedroom and a service came along who was only able to take her out for respite twice a year. This was over cutting all her funding and making a direct payment to a fundholder which didn’t cover for both. I lost the routine of her going out daily, my weekend break every two weeks and my 1 week in May and September.

The only routine I have is the pink suitcase for May and September, however the CCG control our direct payment and are the ones who want to book it, but they don’t. I have not had a break since May 2015, I am only allowed two carers who have been around for my Babes since 2009 to allow me to go shopping for a few hours a day. Sadly I lost my hubby in April and it’s very hard having Babes not accepting me in rooms without daddy and stays upstairs for most of the day until I disappear in the front room where she wants me to be. I would like some law or solicitor if possible to help me with this, tried last year with the DLS but they had no solicitors available, also tried care in the community solicitors who told me they could not help, because my Babes autism is so complex.

Where do I start, I can write pages about her autism to make you understand her, but these professionals don’t, they seem to think a drug might be an answer, knowing full well I have troubles giving her antibiotics when she’s ill. My GP is total rubbish and Babes is on continuing care with the NHS, but this is not looking good at this moment for this exhausted carer

I’m sorry for your loss. It’s no wonder you are exhausted. I’m afraid I simply can’t help with the practical side (my caring was in totally different circumstances). I just wanted to make sure you knew your post hadn’t gone into a black hole. I hope that tomorrow there will be others reading who have more experience than me.

Hi Patty,
I.m sorry you about your husband, it must make coping much harder.

If I’m honest, I doubt you’ll get back the original package of day support and respite that you had before. However its worth fighting for, to get as much support as you can.

Of course MH meds won’t cure / change her, only the right support for her (and you) can do that. Was she detained under section or was she a “voluntary,” patient?

Is she able to communicate?

Do you have a copy of her care plan? If the support stipulated in the plan was funded and provided, would it be sufficient?

Just trying to work out a starting point.


PS what did she do before she went in to hospital?

Your "package of (don’t) care is a complete and utter disgrace. In fact, it’s probably one of the worst I’ve ever seen for someone with such high level needs.
How can either of you live your lives like this?

I would suggest getting Legal Aid for your daughter so that you can get someone else to fight for your daughter’s rights. I’m sure you are so, so, tired that you need someone to help you.

They put her in there has voluntary, even though she told them she wanted to go home everyday, they ignored that. They say she has a lot of money but they want to control it and call it direct payment. I have no means of seeing the money nor having access to book venues or pay for her services if I can get them. They are happy

It seems my Babes autism hasn’t gone by the ways they assume she would be compared to other autistic people and she can be a 2 or 3 to one. They are happy for the carers to come around and sit in my house drinking my coffee and eating my food, my Babes refuses them to care for her, so I am caring for carers and really don’t want services in my home.

I would like to be allowed to control how her money is spent and given the credit card to book stuff that I know would help her get into the community, however, the longer it’s left the worse her routines are in this house. It now takes 3 months of prompting to get her ready to go to special events. They have been asked to book one weeks respite away from home, either May or September, they haven’t done this and yesterday they are saying that it might be too late to do it has everywhere is fully booked. So it isn’t really looking good and I am not getting over my hubby’s loss either.

Think the law needs to change giving carers like me more overall control without this interference which has ruined my life for over 5 years

You need to ask Social Services for an advocate for your daughter and yourself, then arrange new Needs Assessments and Carers Assessments for each of you. Explain that the system isn’t working.

Sadly the advocate is Waltham Forest and they seem to have only one that comes from the CAB, she came briefly last year and didn’t turn up for the meeting, she hasn’t bothered to contact me. The CCG asked her to attend the meetings and she ignored them. I have been referred to have an advocate from carers first but they have ignored that request. It’s a lonely world having no hubby to support you and a daughter who is a routine recluse thanks to these people.

I wish the law would change to give us more powers, if we got the money automatically and had to pay for these people (the other way round), just think how eager and hard they would be available.

By the way it’s always my fault or my daughters fault, that’s what they say for there months of absence

It is your right to have a Carers Assessment. It is your right to choose whether to care at all, or when you want to care. It is your right to say when you are not available.

Then they should give me these meetings and listen, instead they ignore me and that’s the problem, it would be a good thing if there was a proper law and solicitors to sort this out

The relevant law is the Care Act 2014, be sure to look at the Statutory Guidance as well as the act, this is what the government tells the LA they must do.
If your daughter is on benefits, has less than about £6,000, then she is entitled to Legal Aid if the council are not complying with their statutory duties, i.e. what it says in the Care Act.

This article might help?

According to an advocate who had some advice from a solicitor, Babes pay and my carers coming under the CCG NHS would be difficult to legally force them to provide anything. So it’s looking for being forever trapped with nowhere to go. Might think about going to the press

Petty, I’m not allowed to swear here, so I’’ try and moderate my language. The advocate is talking out of his backside!

If someone has care funded by NHS Continuing Healthcare, then all their health needs AND their social needs should be met, completely free of charge.

Google NHS Continuing Healthcare Framework for the rules.

Will do that Bowlingbun, thanks

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Should you be asked to pay an NHS Continuing Healthcare "top-up"?

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Hi Patty

Sorry you’re having so many problems with Social Services…

Your daughter is lucky that she was discharged after 14 weeks - could you google ‘Pathological Demand Avoidance’ go to the NAS website and tick how many apply to your daughter - pathological is changing to extreme

If there is several points then that could be the reason for discharge as MH hospitals deem PDA people as ‘untreatable’ (trust me to have that something like that!)

You daughter must be on enhanced PIP (care & mobility) from 16? You are ONLY legally allowed to pay a contribution from the ‘care component’ from the 7 day period she receives respite - I would also challenge the fact she has 2-1 carers by the fact you have to cope alone?

Your daughters ESA & Mobility can’t be taken as contribution to ‘any’ care - I doubt the carers take her out and claim mileage?

Have you tried Irwin Mitchell for community care lawyers? If you require the assistance of a autism specialist on PDA read my topic post I’ve posted?

Check out ‘shared lives’ as you should be getting more than two a year also it’s your choice when you take respite - book it sooner and take no for an answer!

What was your daughter’s schooling did she go or was it disrupted?

Jamie (fighting back for autism)

There is a facebook group for parents of children with PDA. It doesn’t apply to my son but was mentioned on another FB group I belong to.