Reducing care role and dealing with the LA

New to Carers Connect
1

I’m looking for a little advice on how best to deal with LA if anyone else has been through a similar issue.

I care for my 21year old daughter 24/7, she has autism, learning difficulties, anxiety and catatonic features, she lacks cognitive ability to manage any aspect of her life. She is doubly incontinent, has eating disorder, constipation, rectal prolapsing and on benzodiazepine meds to reduce anxiety…lots more she requires support with but hopefully you get an idea of how much support she requires.

The LA have recently pursued my daughter for charging for the care she receives from them which I am contesting on DRE grounds i.e they have not properly assessed the costs of caring for her. This process has kick-started a whole world of upset resulting in me informing the LA I intend to considerably reduce the care im willing to provide, I have told them I can no longer support/care for 12hrs per day 7 days per week, I have given them a date that this should commence and requested reviews of care plan and carers assessment, and even kick-started an NHS Continual Healthcare assessment.
The LA have put no plan in place for the date I reduce care and are questioning me as to why that date is set. With this date fast approaching I am extremely worried, what should I do on that day, maybe call the duty crisis social worker? I just don’t know and the LA are showing no indication they will step in on that date.

Maybe I just carry on but this fly’s against the law surely?

Just to note I do not claim CA because its overlapping of bereavement benefit, lost my wife (mother to my daughter) 12 years ago. I have to put my daughter in a bath (she will not shower) twice per day, lashings of disinfectant (advised by GP) prompt her into the bath and give instructions to wash properly etc, I leave her to sit in the bath for 30ins and then go in to wash her hair (when needed). With her being a young lady and im her Dad it is obviously not possible for me to properly maintain her hygiene and dignity but the LA are more than happy with this situation even though there is nobody else able to help, no family or friends to step in.

Its all just a massive minefield and im sinking fast with it all, and I have 21years experience of dealing with all of this!

I hope someonme else out there as been through something simlar and come out the other side.

2

Hi Lee.

A reduciion in support services ?

Low millions have experienced exactly the same as the LA cutbacks continue to bite … and bite hard.

A new thread posted this morning … Professor Luke Clements … will give you the legal position :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/la-cutbacks-especially-direct-payments-professor-luke-clement-s-view-38320

Short of lodging an official complaint … end result may well be a formal one to the LA Ombudsman ( Mentioned in several
threads in recent lines ) … hardly anything else you , or any other carer in a similar situation , can do.
( I have assumed that CHC / NhS Continuing healthcare is NOT part of the equation here ? )

3

Hi Chris.

No I am withdrawing my support. Currently I am the only person caring for her 24/7, she does however have DP for accessing social activities of 6hrs pw

I had a carers assessment in 2017 which the LA gave 2 weeks respite allowing me a holiday and the occasional weekend (4 per year).

The DP package was cutback 2yrs ago at a time she was accessing a residential college placement 5 days per week but this has now ended as funding was refused to extend by DfES. Previous to this she has PA support via agency to bath 2hrs PW. Upon leaving residential the care plan has not been properly review (but that’s a whole other story) to reflect her current needs (fast to take, slow to put back).

Thank you for the advice on Professor Luke Clements, having read a few of your threads recently I started watching some of his videos regarding CHC and Carers rights etc, very informative and very valuable to me right now. I will have a read of the thread thank You.

I am still early out the gate on all of this and maybe formal complaints and ombudsmen are going to appear heavily in the near future. Ive got a battle with NHS on funding an operation (prolapse) to deal with consecutively its overwhelming to say the least.

Cheers
Lee

4

Your very welcome , Lee.

Flashback to 2004 … and the very first wave of LA cutbacks ( I became a 24 / 7 lone carer as a result ) … if only a stand
of some sort had been made then … trouble was , NOBODY was interested !

Fast forward to 2019 … and the LAs know they can get away if almost anything … bar a few directives coming in from the
LA Ombudsman.

5

So even though her care plan agrees she is at severe risk to welbeing, severe risk to self harm, neglect of self etc etc in black and white states just how much support she needs they can simply do nothing on the day I refuse to continue as a carer.

Complaints and ombudsmen are down the line yes but what happens on, lets call it “Crisis Day”, the day I leave her alone, the day I have instructed them that I will not be available?

I mean if i was paralysed in an accident they would immediately step in, no choice for them they would be culpable. Surely in law they would be equally culpable if I went to play golf on “Crisis Day” only to come home and she has eaten a battery or something; yes even battery consumption is in her care plan!

I can understand how you have felt fighting all this time, ever in hope of change or recognition correctly relected in law and practiced by Gov.

6

The Care Act says that they should have arrangements in place to provide emergency care to avoid the necessity of someone being admitted to hospital. I suggest you dial 999 and insist that someone comes to help your daughter as you cannot any more. They should then contact Social Services and get the emergency carers in.
My son has SLD, now lives in “Supported Living” with carer support, as I’m widowed with poor health. It’s disgraceful that we should have to struggle before any help is offered. I often feel punished for having a brain damaged child, when it’s actually the faulf of the hospital, giving an unqualified midwife without supervision!

7

Hi Bowlingbun.

Thank You for that, seems a little extreme but if that is the only way then I would do that. Seems the LA are ignoring thier responsibilities, the case manager keeps going on annual leave each time I request meetings but has now at least indicated they can meet me a few days after “Crisis Day”. Do i pospone for a few days maybe or stick to my position (I have already flexed the date back once to accomodate time for their planning),

I understand how you feel, it’s so difficult to fight the huge systems, it makes you feel very unwell. Good to hear you got “Supported Living” for him, do you mind me asking how long it took for the LA to find a suitable placement and carers?

8

https://www.lgo.org.uk/adult-social-care/

Can you get your local MP involved?

9

It’s a long story, here’s a summary.
M was in a 15? bed residential care home, which we chose with great care. We were told his bedroom would be his “forever” bedroom, overlooking the lawn and walled garden, so I spent about £200 on curtain fabric and made lovely curtains for the room (sewing is what I do best), I chose a lovely mirror to reflect light into the room, it was great.
Then the home was bought by The Regard Partnership and a new manager was appointed. Whilde my husband and I were on holiday in Australia (I’d been very ill) the manager decided to move M to an entirely different home, half a mile away, without telling us or Social Services. It was for the most able residents, two other men plus M. I enquired about my curtains. “We were going to cut them off but thought we’d wait until you came home”!!! His old windows were tall and thin, the new ones short and very wide, so I made new ones!
Then, just as he was settled in nicely, a huge room about 20ft long, 14ft wide, we were told that the Estate wanted that back again, so once more he moved. The other 2 men went elsewhere, and the other 2 bedrooms were taken by a member of staff and a female who had a very difficult personality. Then another female moved in, staff moved out, I was VERY unhappy about that, no way should M be left with them and no chaperone.
Things went from bad to worse, the ILF Fraud Officer became involved, told me the management was the worst he’d ever met, and in the end M moved out.
He lives in a privately rented flat, south facing, really sunny. Huge lounge and bedroom, not staff at night needed (there is a 24/7 staffed home run by the same company almost opposite. Getting a reliable agency has been an absolute total nightmare. My son appears very able at first glance, but cannot read, write, do any maths or follow some simple instructions. On the other hand he can light up and manage a 10 ton steam roller with ease!!

10

Lee … new thread of " Essential " reading for you :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/direct-payments-las-and-families-of-disabled-children-cereba-report-38329?p=412941#p412941

11

Hi sunnydisposition.

Yes I have thought about approaching my MP, I have also been advised the same by my daughters surgical consultant regarding NHS matters. Maybe worth combining the two problems with the MP

Thanks

12

Your story reads exactly how I imagined the world of Adult Placement would work, im glad M has finally found something suitable and hope it stays that way :slight_smile: My daughter too presents as able but just like M has no abilty to perform basic tasks unassisted.

13

Thank You Chris, will give a look.

14

Hi Lee
IMHO if someone threaten something, e.g. “I will stop caring on a certain day” then you have to stick to it or it demeans the threat and it becomes nothing more than empty words. Which is why threats cannot be made lightly.
If you meant it when you said it, then stick to it else SS will take advantge and cancel the promised meeting.
You had got to the point that you felt impelled to make the threat. Has anything changed since for the better ?

I know it’s a difficult to decision to make when your daughter’s welfare is at stake but I don’t think they will step up unless you follow through.

Sadly it is the state the system is in that pushes us this far and so many back down or cave in long before it gets to this stage. I admire your persistence and know it’s a heart wrenching dilemma
Will support you whatever happens
Kr
MrsA

15

Hi Mrs A,

Thank You, no things have not changed, there was an exchange of emails with the case manager (social worker) yesterday, they went on annual leave at the end of shift and not returning until “Crisis Day”, as part of the email exchange I asked if they could pass the case onto someone else (it’s only a little over a week until case manager returns) so that we can get support in place for that day.

The question was ignored but they did come back (in bold - verbatim), my response under in italics(verbatim)
o (my manager and he has requested further information as to why the 2nd September is a key date.)
I would be happy to discuss all information with your manager in a meeting or if he/she prefers via email directly, please pass on my email if this is helpful. The most basic reason for choosing the 2nd September as the date I am no longer willing to continue supporting ****** with 24/7 care is – I needed to set a reasonable time period for the LA to put support in place for the hours I am unavailable, initially I set this at just over two weeks from the date of decision 02-08-2019, You indicated that you were to commence annual leave and I felt it unfair of me to expect the LA to act quickly enough given your absence, so I set the 02-09-2019 as a more appropriate date (4 Weeks), also with College starting back on that date I felt this would assist the LA in finding/sourcing/funding the required support for ****** because the hours she is at college should reduce the cost and or complexity to the LA. I would also like to indicate to your boss that I should not have to give reason why I am unwilling to continue in my full current capacity as carer and this should include the reasons for choosing a date, this may come across as unnecessarily obstructive but I feel the LA is not meeting its legal obligations to ******. I love ****** with all my heart and only ever try to do the best I can to support her, in return we meet obstacles, bureaucracy and “cut backs” at every turn, I have and always will fight for the correct support for ****** regardless of the emotional and financial impacts on this family.


The response to that was simply what’s in bold below(verbatim), my reply(verbatim) under that, the reply bounced with an out of office saying, mailbox will not be forwarded and to contact duty ss if urgent. so basically that are ignoring it and choosing to push to the wire.

(I have liaised with my manager and I have been advised we can discuss any further action on my return to work on 2.9.19)
o That’s great, thank You for that.
o I am pleased to hear your manager is fully aware of everything but completely shocked and dishearten they intend to take no action prior to 02-09-2019, what I am now referring to internally, as “Crisis Day”.
o I can only assume your manager is paying as much attention to the Care Act 2014, Ombudsmen and malpractice as he/she (Sorry I don’t know your managers name) is towards ******’s care.


The case manager though has at least arranged to visit on 4th sept to update care plan and carers assessment, they are bringing “Adult Placement” along to discuss moving to foster carers rather than respite being delivered in an “care home” type setting. I am swaying to the idea of continuing care under protest until the 4th, if nothing substantial can be agreed then literally down tools while i have them in the room, will simply walk out the door and leave them with her, come back at 7pm and assess the damage!.

After all that has panned out I could maybe kick the gate open on the complains process, I wish I could feel more optimistic but the buden and stress of complaining I feel is inevitable :frowning:

Yes I completely agree with you the system is a massive mess; lots of people being very polite whilst they dump on you from an extraordinary height.

Thank You for your words and advice it is most helpfull, and, if after we have been through this, we can then help other people with our insight it will be rewarding.

16

I would suggest that you investigate getting Legal Aid for your daughter, assuming she is on benefits, as the LA is failing in it’s statutory duties.
Then you will have someone else to fight the battle with you. Forget about the Ombudsman, so much depends if you get a good one or not!

17

Adult placement sounds a very good way forward. This would provide consistency of care. There will regular care plan meetings etc. The carers will be able to provide advocacy and hopefully you will all be on the same page.

You will have others opinions to back up what you have been saying all along.

Remember if you feel the first set of carers. Maybe who you feel are not good for your daughter. It’s a two way street. Don’t wait for SS to tell you about the carers. Make an upfront list of your expectations to meet your daughters needs.

Adult placement carers are not plentiful so some compromises might have to be made. That shouldn’t deflect from appropriate care.

18

Sorry I’ve not replied and thank you for your ideas . Crisis day came on Saturday, kinda like a perfect storm hitting, resulting in my daughter now on a hospital ward with her own room, she is now getting excellent quality of care from some very good staff.

Been a rough few days but we are now best placed to get the correct support before she leaves hospital. Should have known all this in March, would have saved a lot of problems; hopefully when I do have time and energy to explain it may help others in similar positions avoid unnecessary suffering.

Yes I think after it has all settled down I will be making complaint to all who need to be involved, will probably let the MP become aware as a side note to getting answers why crisis is the path your guided towards before reaching the correct support. but this time from a solid position, not compromised by overload and stress. To early to think about that yet, concentrating only on getting the correct plan and support for both her and myself (Package) in place before she leaves their care.

19

I sincerely hope the LA and hospital will treat your and your daughter’s needs more seriously now you have followed through with your planned actions.

20

Hi Lee,
Keep strong until your daughter’s care is sorted. It is ridiculous that families have to reach crisis point before proper help is forthcoming. Whilst your daughter is cared for in hospital, try and rest and do whatever you need to gather the strength to fight for the very best care once she leaves hospital.

Please keep us updated.

Melly1