Carers Allowance should be increased

[Noras]

Recent events on Mumsnet has made me even more upset about continuing to be a carer for my adult son. There are many carers out there doing the job voluntarily. Their kids are adult and there is no duty of care owned by adults. Moreover there is no asset against which the state can claim against for social care. The decision to care for our off spring is a fervent belief this is best for the time being.

Whilst my son lives at home I get £81 carers allowance a week. If my son lived in supported living I would

Be able to charge £15 per hour carers rate (including holiday and pension).

Be free to choose my hours and never have to worry about cover to go out - that is the States duty of care

Can opt never to have to complete a pip form or universal credit form again - leave it to another carer!

So the push is for me to want my son either on social housing or supported living

Caring duties include

Sourcing and recruiting PA / interview / draft advert and check applicants etc

Send out contracts to PA’s

Chase and send in timesheets

Train PA on how to deal with DS

Draft comments and arrange attendance at EHCP reviews. Chase updated EHCP and check it for amendments and liaise with council etc

Apply for transport for college - if needs be advocate. Liaise college and transport and taxi driver for changes of which there are many
Weekly exchanges of chase up and changes

apply for Pip - complete lengthy form. Be available for interview and conduct interview - DS clearly can’t

Universal credit - apply - argue legal points if necessary - administer funds - set up bank account for DS and administer it via a monintjon or poa

Care

Take for hairdressing appointments
Cut finger and toe nails
Hold tissue and encourage to blow nose as required
prompt shaving and if needs be husband shaves him
grapple with him and insist clothes are changed
laundry
take to dentist and keep eye on teeth cleaning
laundry
clear blocked toilet
prompt meds when constipated or asthmatic and hands on care with cold as he can’t blow nose

Supervision

Stop overeating and monitor diet
Stop crazy eating eg microwaved salad or eating microwaved tuna and sweetcorn at midnight
check his desire to experiment in kitchen
discuss and practice food cookery and what he will do at residential
Ensure healthy diet because that would not otherwise occur
Stop him cutting bread rolls whilst in hand
shopping/ clothing

do all clothes shopping
check wardrobe periodically to ensure shoes js clothes all fit still - he cannot seem to vocalise that need well

Toileting

Be on hand to unblock toilet and clean mess

Activities

Organise all his activities to encourage socialisation eg disabled group or drama group - this includes research for holiday activities

Get debrief form Pa re activity

Liaise with social groups eg one council one needs to know if taxi required weekly etc

Receive feedback form groups re how he is doing/ accessing community

Help with social disabled group so organise an event or two ( to make these things happen)

Take to the gym to swimming to maintain health - this involves micromanagement in say swimming pool

Take out on bus to train and persevere with this
Make him experience busy bus times

Train how to do shopping and wait for change

math skills - ongoing - mental maths an issue due to lack of working memory on 2 and 4 percentile - yet he can do algebra and has a gcse!

Try to train to use Apple Watch as he won’t wear a tracker ( we bought it for him with our own money!)

training - social interaction eg on dog walk or in shops etc

Also keep up to date on all learning activity opportunities and be excellent welfare / eduction lawyers advocates

Finally be there every evening and night due to his anxieties and vulnerabilities unless relieved by PA or activities so I CAN HAVE A GLASS OF WINE

Pay rate £81 per week

as opposed to several hundred for fewer hours work and shared load in supported living / social housing

Thanks - someone accused me of a rant earlier my fault as I did not itemise care needs.

The PA stayed over last night because we were allowed a late night out ( via PA payment) i have already washed and ironed the sheets! People would not even consider that.

Maybe we should all itemise what we do. There is an issue with the degree of care. perhaps some people do take the proverbial - I don’t know. It’s not my job to know and I have no idea what other people do or don’t do.

For me caring has destroyed my life. Here I am almost 60, am intelligent woman who once had people asking her for professional advice.

Currently I’m having more time out of caring as I’m slightly coasting but next year when my son does exams or goes to university all the strains will re-emerge and things become more intense 24:7.. Some times I wonder if I should just give up but then he would never have done as well as he has done. It’s not just the care - it’s the constant rehabilitation and pushing to be better so our charges can have more worthwhile or engaged lives be it memory exercises, mental maths, conversation practice, physical exercises, checking teeth… literally year of playing ‘We are going on a picnic what would you take?’ memory games or ‘secret spy has a secret message memory game etc’

The only reason I have been able to engage here is frankly I have not done my job for my son and as a result there have been a few mess ups in the last few days and for instance one Pa has not been paid ( to be fair I have chased her for a timesheet).

Removal of parental responsibility is exceedingly rare and only done in exceptional circumstances. It can only be done by court order and has associated costs. Costs incurred in the interim can be reclaimed from the parent.

A carer can say I'm done and walk. They have no duty to discharge. The state has the duty.

It's silly to compare as the position is vastly different.

It's absolutely bonkers that some posters think this.

Like I said cloud cuckoo land!

If they are fraudulently claiming carers in order not to.work.....what do they live on?

Even if they get UC, which many aren't eligible for, CA is deducted £ for £.

So a single person lucky enough to get UC claiming CA would get approximately £600 per month. I don't know about you but I couldn't pay my mortgage and all my bills on that. Could you?.

No they can’t. Carers (other than parent carers of children) can up sticks and leave at any time. Parents can’t until their child are adults,

A parent has to go through a court process to terminate parental rights (and by extension responsibilities). I imagine very few do "voluntarily". Normally the state does it to free a child for adoption in child protection / other adoption scenarios. And that's a whole other can of worms.

So there’s no children in the care system or up for adoption at any given time?

Is there any possibility of residential care? I know parents find this difficult but having worked in the sector I feel that finding the right setting and being around to support them in their new life is possibly better than a middle aged adult who has always been cared for by mum and dad suddenly finding themself rushed into a perhaps not ideal setting for them as elderly parents can no longer cope or have died

I know this was said with kindness so I am not sniping.

I am his wife, not his mum :-)

Children in the care system are subject to a process by which the courts legally terminate parental rights / responsibilities before they are placed for adoption. Otherwise parents have rights and responsibilities until a child reaches adulthood. You can't adopt a child without the birth parents parental rights being terminated first. A court can do it without parental agreement if it's deemed in the best interests of the child. Sometimes if there is no hope of a child returning to the care of their birth parents they will "agree" to it, but really they have no choice.

If a parent wants to voluntarily relinquish their responsibilities/rights it still has to be done via due legal process.

Once a child reaches 18 parental responsibility ends, so there is no legal duty to continue to "care" for them in any capacity. Similarly any carer can choose not to continue caring for their "charge" as there is no legal obligation to do so.

In that case the Court of Protection may be called in for example if there is no POA in place. The state has a legal duty to act in the best interests of those without capacity. The CoP may also intervene if a POA is being abused.

At least that's what my current understanding is based on personal experience in both areas, funnily enough.

Determining capacity can be a bit of a moveable feast though, especially if someone is deemed to have fluctuating capacity eg. in the case of dementia sufferers.

Where medical and legal thresholds are concerned, there is alot of emphasis on the rights and autonomy if the person in question, as there should be of course. However, recent personal experience suggests that sometimes it can be somewhat at the expense of safeguarding both the "patient" and their carers. And the cynic in me suggests lack if resources may be a small part of the motivation. Just my observations though.

Yes there are lots obviously- the vast majority of them are there as a result of a court order to remove them from their parents. A minority are there because they were voluntarily given up for adoption at/very soon after birth.

They are not there because their parents randomly decided one day that they didn’t want to provide care for them anymore- there is a legal obligation from parent to child- even in a case of unofficial fostering (for example, a child being left in the care of a grandparent for months) the parents retain PR- they are still legally responsible for the child.

In contrast, unpaid carers for adults can literally walk out one morning without any notice and just stop providing any care.

I don’t know - I had a friend who was desperately struggling with her DH. She couldn’t just “walk out” because it was her home. It took several months before he was placed in a care home, because social services needed to satisfy themselves he lacked capacity to decide for himself which involved other agencies and doctors too. She couldn’t throw him out, legally either - he owned the house with her. They were self funding care too.

So the notion you can just “walk away” is likely only in limited circumstances- ie if you don’t live with them. Which in the case of adult children won’t be the norm. So you can’t walk out with the only consequence being not care. You’d also be walking out on your home and life.

I was talking about the legal position when I said walk away- I meant legally a carer could just leave, and it wouldn’t be a crime (unlike if you just moved out and left your 6 year old behind).

Obviously in real life it’s much more complicated than that, which is half the problem- carers get stuck in situations and this makes it easy for the government to take advantage of them and leave them to struggle on for next to nothing.

Just started to explain my declining 85 year old DFs current situation but deleted as it's like War and Peace and a bit outing. Suffice to say he's walked away from caring for my terminally batshit SM 82 due to recent physical aggression on her part.

He's staying with me (I'm being evicted). Her medical professionals have no duty of care to him. She owns the house outright. She has fluctuating capacity and it's a long slow car crash. Two weeks in and there's alot of tinkering with medication and reviewing going on. Meanwhile he's got his medication and a bin bag if clothes and has been advised not to return by the medics and the police. He's in limbo and under investigation because his lymphoma might have resurfaced.

I can't go to the house as I'm suddenly persona non-grata - well, she is jealous, paranoid and possessive and he's having to pretend he's in a boarding house. We are in communication with her professionals as they still have several excruciating phone calls a day and we are giving them information as she show-times massively for them and loves their attention.

It's an exhausting shit show for him and me. But it illustrates how carers are thrown under the bus as quick as you like when the shit hits the fan not just financially.

Yes, we've tried everything. This week is operation try and get Dad housed as I may have to move imminently to a location not suitable for him as he needs to be close to his GP and my potential new flat will not be big enough anyway.

Wish me luck.

Sorry I thought it was about your child. I do think parents struggle and I always try to reassure them that it isn't an uncaring thing to do.

I'm a carer for my DH, have been for over 30 years and it is different so apologies.

Good luck, it sounds very hard.

I have LPA for an elderly relative as well as being DHs carer. I could never understand how easily she could convince professionals she was fine. An example was a hospital visit, normally someone in the family would accompany her but on this occasion we just couldn't so I arranged hospitaltransport to get her there and back. After the visit a young doctor, well he sounded young, phoned me with a message from the consultant to say he was shocked that we had expected her to get to the appointment on public transport and they had arranged to have her taken home. I explained she had been taken by hospital transport and that I couldn't understand how they believed her story that she had arrived by taking two buses, one on a route she didn't know when as an 85 year old woman who'd had a hysterectomy 40 years ago never mind the menopause was convinced she was pregnant by her dead husband who had risen from the dead. All this announced when walking down the middle of a very busy road which had led to her visit as the police had raised concerns.

I can only say they were very gullible.

I still think you could be charged with Ill-treatment or wilful neglect offences. People on this thread seem to assume social services will step right in. They won’t. They’ll wait for a total and catastrophic collapse of the person needing care in many cases and sort intervene when there’s signs the person needing care is neglected. The level they hold for capacity and needing care is much higher than carers will. Then they’ll only send care for the bare minimum, well below the standard you guys will be providing yourself. Unless it’s self funded and that being the case, it will still be for someone else to administrate.

@EyeOfTheCat On one of the benefit threads there is a post from someone about how a person has been denied disability benefit by the DWP because the DWP has deemed they dont need the care.
However physically they actually do. Now if the carer in this situation was to down tools and walk then how can the state prosecute the carer for neglect when the STATE has said themselves that the disabled/ill person is fit for work and doesnt need care. I would LOVE to see a case like this go to court.

I agree. The standard where people are judged to need state for paid care is VERY low. So in the OP all the state would do is direct payment for PA to agency to appoint and manage PAs. Direct to CAB for help with benefits, etc. Suggest agency for cleaner who can do laundry. Suggest private podiatry appointments for nail clipping. Suggest groups OPs son could attend.
That is probably all he would get. So I do not agree the solution is to pay family to provide much more,. when those without family get so little. I am more concerned at those without family.

Yes, I think you're partly right, but being charged with those individual offences would be separate from any legally defined responsibility as a carer. Obviously if one was receiving CA and allegedly caring for someone for 35 hours a week and an investigation into ill- treatment or neglect found you hadn't been doing that, fraud charges could apply.

However, you can be physically present with a person requiring care and supervision but forcing it on them physically could also be an offence, such as assault, if the person is deemed to have capacity or even fluctuating capacity.

The mental health act is very clear that people even with fluctuating capacity have the right to make unwise decisions. I'm not sure what the threshold is for safeguarding as that seems to depend on individual professional opinion, and due to the multi-agency approach that can vary

Without a POA, which a vulnerable person has to consent to, attempts to interfere with their rights to make unwise decisions could also fall outside of the law.

However, charges would probably be brought on an individual basis.

If dotty Auntie Ethel refuses to bathe, her carer cannot physically force her to do so. This in common sense terms would seem like neglect, but how could you prove that? Likewise a carer can try and prevent wandering and their charge getting lost but if Auntie Ethel sneaks out and there is no section or DOLs in place, the carers hands are tied. Also detaining them against their will is against their rights as determined by the law unless the appropriate legal steps have been taken.

Apologies for waffling on, I'm in the middle of a crash course in all this, and this is what I've gleaned so far.

Horribly frustrating and terrifying TBH.

Assessment of the elderly in particular is a long slow process. They can present completely differently and reasonably lucidly to HCPs for an hour, then for the next 23 be doing and saying things that clearly demonstrate their vulnerability but proving it is tricky.

Honestly I feel like Alice at the moment given my situation with my SM. "Are we all mad here?" Apparently so, and if you're not to start with, we'll fix that for you.

@MistressoftheDarkSide the time things take is another reason I say what I have. I’ve posted about my friend who said without any qualification “I cannot cope, I can’t care for him” and asked that she was relieved of responsibility for his care. It still took months! Social services had heard her say she wasn’t capable or willing. It didn’t alarm them or spring them into action.

Similarly I have someone in the family with a disabled son. He has ASD and LD, after a violent outburst implicating the small children she rang and asked he was placed into care. Again, nothing for weeks and weeks. The wheels turned but at a slow rate! I’m pretty confident the only reason they intervened at all was the safeguarding issue for the children. Even then it’s only a tick box paper exercise of a safety plan. They don’t care a jot about adult carers who are exposed to violence from disabled people.

If you are abusing the person you care for obviously that’s illegal because disabled people are still people, so we have the same rights as everyone else.

But deciding you aren’t going to be a carer anymore, or you will only do certain tasks, or will only do caring on Tuesdays and Thursdays or whatever is perfectly legal.

https://www.cftc.org.uk/a-guide-to-carers-rights-for-unpaid-carers/

You're absolutely right.

My latest mission is getting help from the council to house my Dad. He's been advised not to return to the property by the police. She owns it solely outright. However because they are married and he has "rights" to stay there, even in the face of safeguarding concerns unless the police are willing to provide that evidence of what they said, he has made himself intentionally homeless.

I'm hoping they can do some bloody joined up thinking but the irritated tone of the housing officer implies otherwise.

We are in immediate crisis, but never mind eh? Bureaucracy is all.

I have visions of me, my Dad and my cat dossing down under the pier. At least it's the right season for it. And if it kills my Dad on the meantime well, that's a few quid saved eh?

@MistressoftheDarkSide im so sorry you are going through all that

@JenniferBooth

Thank you lovely x Today has driven me to complete meltdown to be honest, mainly due to obtuse council employees. My God I know it's not their personal fault but my belief in eugenics by stealth / bureaucracy is getting stronger by the second. And knowing how many other people have been tipped into the handbasket we're all going to hell in by the COL crisis terrifies me.

That’s completely not the case with adult children who seem to have decent PA and direct budgets plus the parents can also be employed as PA and legally you can’t be done for neglect or any such thing unless years as someone who knows this stuff were misspent.