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

Social services won’t let (as in you can’t use a home adaptations grant) to build an annex and have careers as they see you’re “excluding/isolating” that person.

I know because we enquired, when at our witts end keeping the younger children safe.

They see care as a better solution.

i think that it should be slightly higher and maybe graded. As people will no doubt point out they do more care. Lots of people do more care then me and lots of people way way lower care.

It's wild too that you can only ever claim carer's allowance for one person no matter how many people you are responsible for.

But if she’s eligible for more than £81 a week
she may still get some extra. Of course I don’t no if she would be eligible though

No, I'm active on the threads about these issues and I think immediately telling someone to step away from mumsnet when they are asking for discussion about issues pertinent to many which should be highlighted is rude and unnecessary especially when it's the first response. I don't see shadows I see people devoid of empathy. And it's patronising and infantilising to tell someone who wants a discussion because they are upset not to have it on a public forum "for their own well-being". Your subsequent post revealed your true agenda.

I normally have little time for mumsnet and rarely post. But the government has introduced a green paper for pip so carers allowance etc is also topical.

i think that the debate is important. As said my days on caring allowance are almost over - thank goodness! I’ll be moving in any event to
being a PA and that will be. Whole new world of challenges when he eventually moves into independent living of some sort.

Clearly some people here think that carers allowance should be both asset and earning means tested. However as the care is given voluntarily that might cost the state more!

I think it should be increased but graded. So some people care all day with feeding tubes and having to turn etc, some people like me have our kids at college so that takes some of the care but when they are home they can be a bit intensive some purport to care remotely when kids are at university in other cities but would argue provide crucial telephone support etc

Yes of course it absolutely should. It's a disgrace.

Carers save this country many millions and the entire system would break if it wasn't for their goodwill.

It's beyond me that anyone can vote the other way.

@Noras and other people on here that have actual experience of this system.

Do you think that the refusal to pay us and put the money into the hands of care providers is because this benefits the providers, the companies that provide the contracts, those reaping the profits/ financial rewards?

So it doesn't matter to the Government if it's not economically the best option for the tax payer or for us?

We as well as our loved one are the cash cows that just keep giving.

Got to look at ultimately who benefits most from the system.

Spoiler alert! It's not the disabled.

i do agree with that to protect those that don’t have loving, caring people at home but it could be monitored quite easily. It’s also nonsense because I know of several of my son’s peers that have single person occupancy houses with full time care which was arranged through the LA. Obviously these kids are adults though.

It seems insane to me that so many of my friends have opted for full time care as they cannot afford to stay at home to care for their kids once they finish education but with a decent amount of money snd good day services it would be achievable and would save LA’s a fortune. My son has quite severe challenging behaviour so for us full time care was the answer. It’s good for him too as he really does have a lovely and very active life there. I’m just saying with a decent care package some kids could stay at home .

Carers are not paid in line with NMW. And they do not want to get a higher pay than that. As it stands, we are paid just £2.34 per h. That is far below NMW. I don't think carers who have to provide a minimum of 35h of care per week would complain if it was paid in line with NMW. But it's less than 1/5 of that!;

It should be 35 hours x living wage and truly considered to be a job.
It would still save the government huge huge amounts of money.

If they had to support and house my youngest who is now 23 for the rest of his life he would need a specialist secure unit and full time 1:1 with 2:1 in public or at times when he lost control. He could not safely be in a group home because of his extreme reactions to other people with disabilities. So he would need his own secure home with a minimum of 2 staff on site day and night. Everyone who supported him would need a high level of training.
He has got such complex needs and challenging behaviour that although he gets direct payments, we can't find any respite centre that will take him and we can't get anyone to work with him.

Imagine the bill if my husband and I said to social services that he is the responsibility of adult services and they had to suitably house and support him for life.

A thousand a week? 2? More?

My older son needs prompting and social support and physio etc, anyone think that could be provided for 80 quid a week?

The government keeps carers allowance low and means tested and only allows you to earn a little before it's removed because although they fully understand how many millions family carers save the country, they also know we would never show up at social services and say here you go, you are now responsible for this person.

And that is what it would take

Enough of us getting together and saying on this date we will all withdraw our care and social services who have a legal duty to provide care and support for disabled adults have to take over because we are bringing those we care for to your offices and leaving them with you.

Absolutely nothing short of that would change anything - and they would have to 100% believe that it is happening and that no threats from them will change that .

Exactly, I'm not sure the government could afford it either. Everyone wants their allowance/benefit/pension to go up but how sustainable is it?

I have suggested that.

I had to almost threaten that to get holiday respite but be noted I have to spend a day ringing agency’s and getting hourly rates as required by social services. Once chosen I have to do a care needs assessment with the agency etc just to get a holiday. I think have to prepare the agency worker.

Frankly it’s as taxing as doing a professional job. In the old days social services would source the agencies etc now they don’t do it unless for wrap around care. I asked them to but it’s for me to get prices and put together proposals for a personal budget.

You can end up with multiple budgets eg for education or for care etc I feel like I am a glorified administrator when I just want to do cooking with him.

Because carers are saving the Government millions. They are providing a service.

Technically they can walk away and the tax payer would ultimately just have to lump it. Its false economy not to raise CA.

In theory/moral terms yes, but in practical terms it just isn’t possible.

I’m going to run for cover after writing this but I don’t see caring for your own family as a favour to the outside world as such. It must be absolutely gruelling and I agree that it should be financially supported as much as is realistically possible, but you could extend the argument to say any parent is saving the taxpayer millions by not putting their children in care. As with every other type of benefit and waiting list, the number of people in need now is just astronomical and we can’t hope to fulfil all of it.

The vast majority of carers on here seem to be caring for ND children and there is no doubt this has risen astronomically virtually overnight. We need an urgent investigation into why because almost everything else is just a sticking plaster. The more people that become in need the worse it will get for people already in need.

And just to do the maths, 1.4 million people claim carers allowance.m (1 in 40). To pay each £25,000 would cost £35 billion. I can’t think of what we could cut to produce this figure, it would have to be 50% of the education budget or 20% of the NHS budget. Basically it just isn’t possible without major compromise in another area

Except it is a "favour" in so far as an individual is under no legal obligation to provide care for an adult.
In the UK at least, social services does have that obligation.
It could therefore be argued that care provided by a party that has no legal duty as opposed to a party that does is a "favour". For want of a better word.

If we are arguing that disabled adults are the responsibility of their family for their entire life then surely we can only argue the same applies to elderly relatives which means the family should house and care for elderly parents instead of social services providing places in residential, care or nursing homes. Yet how many elderly people are in homes paid for by the state?

As a parent you care for your children. But when those children grow up and are in their 20s? 30s? 40s? 50s? And they are still living with you and you are providing all their care and support?
At that point you are actually doing social services job and saving the country a fuckton of money.
That should be recognised and appreciated.

Because we don't HAVE to do it and if we stopped then the government would have to provide care and support and yeah, good luck with that.

Tbh, at this point I'd just be chuffed if it stopped being a means tested benefit!

I cared for my son for 20 not 18 years and quite frankly for 18 years without carers allowance for various reasons. However when I did claim it seemed a pitiful amount. Looking after adult kids is usually a life time need.

Temporarily I have cared for my father who died at home of a sinus melanoma and mopped his blood / emptied his catheter etc and my mother who had vascular dementia. My care for my father was beyond the normal levels of care as he refused hospice. So he would haemorrhage blood significantly - I was trained to do things like empty the catheter and pack his nose. I know about mouth care on dying etc Recently people have called upon me to help and advise them. By the time he died he was bleeding for m his eyes and into the roof of his mouth.

The latter two were situations that lasted a couple of years or so perhaps more in the case of my mother - about 4 years - very different to caring for an disabled adult child caring for elderly parents - I have done both: My mothers care was intense and stressful - admittedly the last 6 month in care as the night time care was too much.

My arguments are

1 The duty is on the state once a child reaches 18

2 By your argument no one with parents should say claim universal credit as why should the parents not also support them financially?

3 Caring for someone impacts the other persons or carers well being and financial status eg lack of pension other than state etc. Many people are in a terrible financial position due to caring roles as they have no savings etc. If I was not married I would be in a mess right now financially.

It's not comparable. People choose to have children. They also have a legal duty to pay for them. Carers for adults do not.

The majority of carers are not for ND children. The prevalence of disability rises with age. Children make up approximately 11% of the disabled so the vast majority of carers are for adults.

It's tough shit basically if they choose to withdraw this goodwill.

I’m not arguing against it on a moral level - if the world was morally just then all carers would receive a generous wage and live very comfortably off it while also having regular respite.

But, we don’t live in a world that runs off moral justice unfortunately. Our economy simply cannot support your idea.

Carers for children at least on here seem to overwhelmingly cite ASD, ADHD or both as the reason - if you go on the DLA thread this is also the case. I can’t find a breakdown by condition but if you can I would be interested to see.

In theory at least it can't afford not to.

If all carers downed tools so to speak our society would collapse.

It's funny how we find the money for everything else but reimbursing carers for essential service is somehow unaffordable?

It's rubbish. They absolutely could. They just don't want to.